(Add to authorship: on behalf of the ASSET-Stroke project team)
Introduction: Successful long-term management of stroke relies on self-efficacy, a person's confidence in their own abilities. Less than half of all stroke survivors are supported to understand or improve self-efficacy.
Aim: To co-design a digital resource to enhance self-efficacy.
Methods: Integrated Knowledge Translation. People with lived experience of stroke (survivors and carers) were involved from conception to completion. The investigator team included one survivor and one carer. A lived experience working group (n=16) was convened to consult throughout the project.
Results: Six working group meetings were conducted between June-December 2023, co-facilitated by a research assistant with lived experience of stroke. The working group was asked to define self-efficacy, guide its measurement, select the digital platform, advise on included content, resource layout and navigation. The preferred platform was a website that was stroke-specific, included messages of hope, stories of personal recovery that could be tailored to the individual.
The working group reconvened from March-April 2024 to review the website prototype, provide advice on the layout, colour, and language. The domain name was workshopped and selected; “EmpowerMe”. Twenty-one stroke survivors and eight carers recorded videos sharing different aspects of self-efficacy, recovery and self-management.
Conclusion: Stroke survivors and carers planned, designed, and reviewed content to build a website to enhance self-efficacy after stroke. The website is ready for user testing.
Relevance to patient experience: The stroke survivor and carer journey is variable, yet self-efficacy is a constant in effective self-management. Listening to these voices ensures the self-efficacy website is meaningful and empowering.