Towards personalized care for persons with spinal cord injury: a study on patients' perceptions

Objective/background: A newly designed Spinal Cord Unit (SCU) was set up at the Orthopedic Traumatology Center (OTC), Turin, Italy, in July 2007. With the relocation of the SCU came the need to reorganize and improve the delivery of its services. The study reported here is a preliminary part of a project entitled 'Experimentation and evaluation of personalized healthcare for patients with spinal cord injury', which is a component of an overarching program of targeted research into healthcare funded by the Piedmont Region in 2006. The aim of this study was to assess the perception of care by patients with spinal cord injury (SCI) by collecting important data in order to determine whether an integrated and personalized care pathway could be effective both in hospital and in a rehabilitation setting. Design: Qualitative research study. The interview format was based on a narrative approach. Methods: Qualitative in-depth semi-structured interviews were conducted with 21 patients with SCI. Qualitative content analysis was used to identify categories and themes arising from the data. Results: Six main categories emerged from the perspectives of patients: expectations of rehabilitation care, impact and welcome, relationship with nurses and their involvement in treatment, relationship with physical therapists and participation in rehabilitation programs, relationship with physicians and their availability and attendance, and imparting of information on injury and rehabilitation outcomes. Care was the aspect new patients admitted to the SCU found most important. When closer relationships with staff formed, the healthcare professionals became an essential support. Patients with SCI commonly stated that receiving explicit information was necessary for accepting their condition. Conclusions: Analysis of the patients' perceptions revealed a wealth of details on their experience in the SCU and the need for flexible planning of care time in particular. Incorporating the patients' perceptions into a new care model could increase professionals' awareness of patients' needs and provide a useful basis for constructing a personalized care plan.