From open to locked doors – From dependent to independent: Patient narratives of participation in their rehabilitation processes

Abstract

Aims and objectives: The present study aimed to explore patients' experiences of participating in their rehabilitation process in the context of specialised rehabilitation in Norway. Background: The rights of patients to participate in their care and treatment is an ideology that underlines newer international and Norwegian public documents. However, there is a gap between policy statements and clinical practice, and a discrepancy between patients' and professionals' statements about patient participation in rehabilitation. Design: A qualitative approach with a narrative design. Methods: Eleven patients were individually interviewed to tell their stories about the rehabilitation processes. We utilised narrative analysis with a three-dimensional space narrative structure including temporality, sociality and spatiality. This study followed the COREQ checklist. Results: The analysis identified two throughout plots: ‘person-centred culture’ and ‘time’, and three plots which constructed how the patients participate in change through the rehabilitation process: (a) dependent—‘open doors’; (b) motivation from within; and (c) independence—‘locked doors’. Conclusions: Patient participation in rehabilitation was dependent on person-centred cultures in the unit and on different aspects of time. The dialogue and the power balance between the patients and the health personnel changed as the rehabilitation progressed. Motivation for rehabilitation had to come from within patients. The paternalistic ideology did not seem to dominate the specialised rehabilitation unit in the present study. Relevance to clinical practice: This study gives new insight into how patients participate in change in the rehabilitation process. This can be valuable for healthcare professionals and governments. Insight into how the lack of person-centred focus can harm the rehabilitation process, and a deeper understanding of the meaning of time in the rehabilitation process is essential. These results may provide a stimulus for discussions on how patients might participate in their rehabilitation process.