Users’ experiences of an evidence-informed health information website for spinal cord injury: A prospective qualitative study across the hospital and community setting (Preprint)

Abstract

Access to quality health information is essential for self-management after serious injuries such as spinal cord injury (SCI).

The goal of this study was to evaluate the role of a consumer website in addressing the information needs of persons and families with SCI, as well as its impact on their knowledge and behaviour.

Persons with SCI and family members were recruited from 3 settings: an acute hospital, a rehabilitation hospital, and an SCI community organization to acquire perspectives from early after injury to the chronic stage. Participants were introduced to the Spinal Cord Injury Research Evidence (SCIRE) Community website, which was an internet site developed to provide evidence-informed health information about SCI in everyday language. After using the SCIRE Community website for 4 weeks, semi-structured individual interviews were conducted to explore purposes of use, user experience, and impact on knowledge and behaviour. Interview transcripts were analyzed using qualitative thematic analysis.

The participants were 24 individuals (18 persons with SCI and 6 family members). Thirteen participants completed the study in a hospital setting and 11 participants in a community setting. We identified 3 main themes in the data: (1) ‘An internet tool to support and empower persons and families’ described the empowering nature of access to an independent information source which enabled persons and families with SCI to take a more active role in their care; (2) ‘an accessible source of credible information’ described how users valued easy to access content with oversight by experts (i.e., perceived to be trustworthy); and (3) ‘Opportunities to increase impact’ outlined suggestions on creating opportunities to engage with content through active learning strategies and community connections.

Persons and families with SCI valued having access to an independent online health information website, especially early after injury, as it helped to empower autonomy and facilitated better communication between persons and families and healthcare providers. Our study provides support for the value of internet-based health information as a supplementary tool for therapeutic education for persons and families with serious health conditions such as SCI.