Experiencing the unreal mapping patient journeys from injury towards rehabilitation for a life with tetraplegia

When patients are brought to the emergency room with a traumatic injury to the spinal cord, the road to recovery is long and uncertain. In minutes, their lives have been irreversibly altered. Time will tell if the paralysis to the limbs is permanent or if some degree of mobility or sensation can be reacquired. To many patients, the first weeks feel almost unreal. They find themselves in a state of shock, and feelings of uncertainty and loss of control are dominating. Spinal cord injuries are treated in multiple specialized hospital units. Each unit is accountable for providing the best possible treatment within their area of expertise. While continuity in care has been a hot research topic for the past 20 years, few studies provide empirical data on patients' perspectives on long-term hospital treatments. This study examines how patients with tetraplegia experience continuity in care when they journey across multiple hospital units over the course of several months. This paper is based on a study of patient pathways for patients with tetraplegia caused by high spinal cord injuries. Semi-structured interviews were conducted with nine patients, seven next of kin and thirteen healthcare professionals in Copenhagen University Hospital. Data from the interviews were analyzed using patient journey mapping, to uncover variations in patients' experience during various stages of their admission. The study finds that patients are struggling to maintain a sense of control over their life as they continuously engage in negotiations of perceptions of their body, of the physical surroundings and of their perception of time and the future. The study concludes that health care professionals should be mindful of these key themes to support the patients' empowerment and active participation during recovery.