ArticleSpinal cord2026
"It has to work for us": A qualitative study exploring how lived experience engagement reframed development of a mental health module within a Spinal Cord Injury Self-Maintenance Tool.
Article in Spinal cord, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Not yet cited in PubMed.
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Corrections and comments
- Erratum issued
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionPeople with spinal cord injury can experience various psychosocial challenges when adjusting to their injury. It is essential they have access to evidence-based resources that can enhance their adjustment. During the development of the Spinal Cord Injury Health Maintenance Tool preliminary lived experience feedback highlighted the need to include an additional module on mental health. STUDY
designQualitative study.
objectivesTo co-design a new Mental Health module with people with spinal cord injury during the digitisation of the Spinal Cord Injury Health Maintenance Tool.
settingCommunity in Sydney, Australia.
methodsTwo focus groups involving participants with lived experience of spinal cord injury (n=5 and n=4) were combined with a one-off expert review process.
resultsFive key informants engaged in the collaboration. Four key themes summarised how this second round of lived experience progressed the mental health resource: 1) Mental health is front and centre highlighted the necessity of including mental health in any self-management plan for spinal cord injury; 2) Striking the right balance acknowledged the serious impact of mental health issues but without undue negativity; 3) The glass is half full emphasised the need for a greater focus on a strengths-based approach; and 4) Variety's the spice of life required the Mental Health module to respond to individual circumstances.
conclusionsLived experience feedback ensured that the tone, scope and content of this module were revised to place greater emphasis on a strengths-based orientation, while still acknowledging the serious and severe outcomes associated with compromised mental health.
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