Priorities and opportunities for advocacy in SCI: An international web-based review.

Abstract

Context: For the growing number of people with spinal cord injuries worldwide, advocacy organizations are an invaluable resource of information and education during recovery and rehabilitation.

Objective: To examine the structure, information, and accessibility of websites from international organizations that serve and advocate for individuals with SCI.

Methods: We performed a content analysis of information available from SCI organizations returned from a Google search. We used search terms relevant to SCI and advocacy and applied them to top-level domains for the G20 countries. Organizations that provide services or advocate for people with SCI with English-language websites were included; organizations focused on research, fundraising, clinical care, interprofessional knowledge exchange, or other neurological conditions were excluded. Accessibility, in terms of ease of use to information about participation, was assessed using a 3-point scale.

Results: We identified SCI organizations from 27 different countries across six regions: Africa (N = 4), Asia (N = 5), Europe (N = 27), Middle East (N = 1), North America (N = 12), and Oceania (N = 11). Across these, six categories of resources and services are covered: (1) education, (2) physical health, (3) external, (4) peer support, (5) mental health, and (6) financial and legal. Eleven organizations indicate specific engagement with research or clinical trials. Four websites provided highly accessible information (rank = 3) about participation in research.

Conclusion: The SCI organizations identified in this study offer resources that largely pertain to education and physical health services and strategies. Information about clinical trials and SCI research studies are easily accessible on the websites of the limited number of organizations offering avenues for participation.