Introduction: Many stroke survivors do not receive vocational support, and when it is provided it is generally in the early phase of recovery. However, stroke sequalae can impact work ability over the long term (e.g. beyond 12 months post-stroke). During feasibility testing of a telehealth based vocational support service (RESET), we engaged an Advisory Group of people with lived experience and clinicians. Members reinforced the need for vocational support over the longer term; given the absence of such services we embarked on a co-creation project to fill this gap.
Methods: An Advisory Group of 12 stroke consumers, clinicians and carers met three times over 2021-2022. Following this, a sub-group attended up to 9 co-production sessions (1-hour sessions; approx. 5 attendees/session). Sessions were recorded, and viewed by an experience stroke clinician, and the team was supported by a steering committee of experts, clinicians, lived experience experts and partners.
Results: First, perceived overall service gaps were elicited; these were then narrowed into intervention targets and prioritised. A personalised action plan to manage stroke sequalae in the workplace was identified as an achievable and important target. Remaining co-creation sessions focused on developing a three-session workbook style module that could be used to facilitate creation of this work action plan. This module followed self-management principles, and was applicable to any time post-stroke, and at any stage of the work journey.
Conclusion: Co-creation with people with lived experience resulted in not only a new work action plan, but also modifications to RESET to support people any time post-stroke. The effectiveness of RESET will now be tested in an Australia wide clinical trial.
Relevance to clinical practice or patient experience: Partnership with people lived experience resulted in significant modifications to our vocational support program to better meet the needs of a broader population of stroke survivors.