"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.

Abstract

People 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. Qualitative study. To co-design a new Mental Health module with people with spinal cord injury during the digitisation of the Spinal Cord Injury Health Maintenance Tool. Community in Sydney, Australia. Two 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. Five 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. Lived 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.