The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home

Purpose: To open a discourse on the concept of autonomy as a precursor for participation in individuals with Spinal Cord Injury (SCI) by exploring the experiences about their perceived autonomy in their transition period from hospital to home. Method: Based on the 'grounded theory' approach; in-depth, semi structured interviews were conducted with 11 SCI-patients. A theoretical sampling strategy was used and the data was analysed according to the constant comparative method. Results: To capture this complexity of autonomy, the results have been structured in themes with regard to the self of the patient and his independency. The analysis showed four different typologies of how autonomy is perceived; (1) the active agent, (2) the active follower, (3) the passive follower and (4) the passive victim. Conclusion: Rehabilitation professionals can help individuals in disconnecting their internalised ideal of independency to avoid the illusion of being autonomous and can gain insight in the patients' typology and empower patients to avoid the paradox of being autonomous. If the ultimate goal of rehabilitation is participation; empowering the patient to achieve a 'sense of agency' instead of autonomy is the central goal for rehabilitation professionals. Empowerment and agency are key topics for the patient to gain mastery over his own life.