Patient participation in care and rehabilitation from the perspective of patients with spinal cord injury

Study design: Qualitative method, semi-structured interviews. Objectives: The aim of the study was to explore the meaning of patient participation in care and rehabilitation from the perspective of patients with spinal cord injury (SCI). Setting: Post discharge community setting. Methods: Semi-structured interviews were performed with 10 persons with SCI representing different ages, gender and levels of injury. All interviews were conducted individually and lasted 40-120 min. The interviews were verbally transcribed and the data were analyzed by means of content analysis. Results: All informants stressed the importance of patient participation as a necessary prerequisite for successful care and rehabilitation, but emphasized that participation must be tailored to each patient's own preferences, capacities and needs. They also underscored that the staff should be sensitive and responsive to the fact that desired levels and kinds of participation may vary from patient to patient, as well as for the same patient during the course of the rehabilitation. Five themes reflecting central aspects of participation emerged: respect and integrity, planning and decision-making, information and knowledge, motivation and encouragement, and involvement of family. Conclusions: Patient participation is a critical component of successful SCI rehabilitation and must be facilitated, promoted and tailored to each patient by the staff. Based on the finding from this study a questionnaire has been developed for assessing patient experiences of five domains of participation in rehabilitation to serve as a tool to help in evaluating provided care and in identifying patients' preferences for participation.