Self-Advocacy among People with Spinal Cord Injury (SCI): a qualitative study

Abstract

Background: Self-advocacy empowers individuals with spinal cord injuries (SCI) to assert their rights and overcome barriers like inaccessible infrastructure, societal stigma, and inadequate healthcare. SCI affects not only physical abilities but also psychological, social, and economic well-being, making self-advocacy crucial for independence and inclusion. However, research on the experiences and challenges faced by those with SCI is limited, especially in socio-cultural contexts like Bangladesh, where disability is often stigmatised. The lack of accessible infrastructure and societal attitudes can further marginalise individuals with SCI, restricting their ability to voice their needs. Understanding self advocacy is essential for informing policies and practices that empower these individuals to achieve independence and foster societal inclusion. Aim: This study aims to explore the insights, awareness, experiences, and barriers to self advocacy among individuals with SCI in Bangladesh, including the roles of support networks, healthcare professionals, and cultural norms. Methods: The phenomenological approach of qualitative research design was chosen for this study. Purposive sampling was used by including 13 participants who were clinically diagnosed with SCI. The data saturation process was utilised to reach this particular number of participants. Data was collected through face-to-face, in-depth, semi-structured interviews using a self-developed interview guide. The data were analysed using thematic analysis, following Braun and Clark’s six-step approach. Result: The findings highlighted the vital role of self-advocacy in empowering individuals with SCI to assert their rights, navigate challenges, and promote inclusion. However, legal, societal, and cultural barriers, such as discrimination, stigma, and a lack of awareness, persist. Participants emphasised the influence of support systems, healthcare interactions, and societal factors, stressing the need for education, policy reforms, and infrastructure improvements to enhance self-advocacy, accessibility, and autonomy in Bangladesh. Conclusion: This study underscores the vital role of self-advocacy for individuals with SCI in Bangladesh, highlighting common themes such as self-awareness, persistence, and support systems. It also reveals unique challenges tied to cultural norms and resource limitations. The findings underscore the need for targeted interventions and further research to address these gaps, with the goal of enhancing self-advocacy efforts, improving quality of life, and fostering empowerment among this population. Keywords: Self-advocacy, Wheelchair users, Spinal Cord Injury (SCI), Awareness, Insights, Experiences, Barriers, Healthcare professionals, Advocacy challenges, Empowerment, Rehabilitation, Social inclusion