Information needs and information sources of individuals living with spinal cord injury

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

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An Assessment of Which Sociodemographic and Spinal Cord Injury–Specific Characteristics Influence Engagement With Experimental Therapies and Participation in Clinical Trials

Topics in Spinal Cord Injury Rehabilitation ◽

10.46292/sci20-00070 ◽

2021 ◽

Vol 27 (4) ◽

pp. 28-39

Author(s):

Carlotta Pazzi ◽

Clara Farrehi ◽

Maclain Capron ◽

Kim Anderson ◽

Bonnie Richardson ◽

...

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

Clinical Trials ◽

Information Needs ◽

Online Survey ◽

Medical Center ◽

Bladder Function ◽

Cord Injury ◽

Experimental Therapies ◽

Trial Participants

Background: Although a number of experimental therapies for spinal cord injury (SCI) have recently emerged, few authors have examined the goals of individuals with SCI considering experimental therapies, and none have determined whether sociodemographic and injury-specific characteristics influence that engagement. Objectives: To determine (a) the goals of individuals with SCI who are considering experimental therapies; (b) whether sociodemographic factors, injury-specific characteristics, and concerns over adverse events influence those goals and/or participation in experimental therapies and clinical trials; and (c) whether people with SCI feel they have adequate information about experimental therapies and clinical trials. Methods: An online survey that yielded 364 responses. Results: Most respondents (83.7%) had sought information about experimental therapies, and just under half (47.8%) had received one. The most frequently cited functional goals were improvement in bowel and bladder function and elimination of dysreflexia (60.4%). Several goals were influenced by age and level and completeness of injury, and most respondents (93.4%) wanted more information about experimental therapies. Just over one-third (34.6%) of respondents had participated in a clinical trial, and nearly all (96.9%) wanted more information about them. Having received experimental therapies and participated in clinical trials was positively correlated with seeking SCI-specific care from an SCI specialist rather than from a primary care physician. Most (83.9%) respondents would avoid or be reluctant to engage with a medical center if they were made aware of harm done to trial participants. Conclusion: This work suggests that there are unmet information needs among people with SCI, specifically pertaining to experimental therapies and clinical trials. It also reveals that improved access to SCI specialists may enhance access to novel treatments and research efforts. Being made aware of harm to trial participants may influence the decision of individuals with SCI to seek care at or enroll in trials at these clinical sites.

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