Participatory Design of an Online Self-Management Tool for Users With Spinal Cord Injury: Qualitative Study.
Sonya Allin, John Shepherd, Jennifer Tomasone and 4 others
PMID 29563075WHAT IT FOUND
People with spinal cord injury wanted online self-management information that was trusted, peer-linked, and accessible.
Anonymous ratings felt risky; they preferred human navigators and clear credibility labels. The tool was designed, not tested for outcomes.
Key findings
01Trust, expertise, and community appeared in every group conversation.
02Participants used the internet to prepare for health care visits and to revisit information after discharge.
03They favoured online information navigators and activity feeds rather than user points.
STILL TO COME
How it was doneWhat they foundWhat it means for PTs
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What it does not show
The group was small, so their views may not represent the wider spinal cord injury community. All participants had regular high-speed internet access, so people without access may need different support. Participants with spinal cord injury had lived independently for more than 5 years, so findings may not apply to people recently injured or dependent on services. The tool was designed and prototyped, not tested for outcomes such as self-efficacy and health care utilization. Some design features, such as ratings and points, were discussed but not evaluated in real users.
Declared interests
The work was initiated by stakeholders funded by the Rick Hansen Institute. The authors declared no conflicts of interest.
The easy way to misread this
Do not conclude this online self-management tool improves self-efficacy or health care utilization. It was a design study with no outcome testing, and only a small group with regular internet access was involved.