Surveying people with spinal cord injuries in Brazil to ascertain research priorities
Fabiana Faleiros, Deyse Cardoso de Oliveira Braga, Soraia Dornelles Schoeller, Sílvia Helena Henriques Camelo, Naira Beatriz Favoretto Cunha, Lorena Gomes Neves Videira, Adriana Cordeiro Leandro da Silva Grillo
Abstract
Scientists are concerned that the research they conduct accurately portrays the needs of people living with spinal cord injuries (SCI). As such, this study set out to investigate the main problems faced by people with SCI and their expectations for research. This quantitative, exploratory, analytical, and cross-sectional study was carried out online, with a non-probabilistic sample of 618 Brazilian adults with SCI who had registered voluntarily to participate in the research of the Neurorehab group. The virtual questionnaire consisted of 22 questions based on ISCOS Data Sets. The majority (68.9%) of participants were male, with higher education or a post-graduate qualification (49.5%). Most injuries had experienced traumatic injuries (78.5%) and 58.7% were paraplegic. The mean age was 38.04 years (SD = 9.85). The main difficulties faced after SCI were locomotion/accessibility (70.9%), neurogenic bladder (68.8%), neurogenic bowel (48.2%), and sexuality (36.1%). The highest demand was for experimental studies on stem cells (22.5%), rehabilitation (14.2%), and cures (13.9%). Most (84.3%) of those who reported sexuality problems after SCI were men (p = 0.013). The findings obtained empower people with SCI by enabling them to influence the agenda of scientific research based on their expectations and difficulties. This survey will also aid organizations to engage stakeholders to implement a comprehensive SCI management program.