Active participation of people with spinal cord injury in the design of scientific research

Abstract: Scientists are concerned with conducting research that accurately portrays the needs of people with spinal cord injury (SCI). As such, the main difficulties and desires for research according to people with SCI were investigated. This is a quantitative, exploratory, analytical, and cross-sectional study carried out online with a non-probabilistic sample of 618 Brazilian adults with SCI, who registered voluntarily to participate in the research of the Neurorehab group. The questionnaire consisted of 22 questions based on Data Sets from ISCOS. The response rate was 64%, with an average time of 11 minutes to complete the form. The mean age of the participants was 38.04 years (SD=9.85). The majority (68.9%) were male with higher education or a post-graduate qualification (49.5), and 58.7% were paraplegic. The main difficulties after SCI were locomotion/accessibility (70.9%), neurogenic bladder (68.8%), neurogenic bowel (48.2%), and sexuality (36.1%). The most desired studies were stem cell experiments (22.5%), rehabilitation (14.2%), and studies aiming at a cure (13.9%). Most (84.3%) of those who reported problems with sexuality after SCI were men (p=0.013). The obtained results empowered the people with SCI by enabling their participation in the future design of scientific investigations considering their desires and difficulties.