J Med Internet Res. 2026 Mar 12;28:e76756. doi: 10.2196/76756.
ABSTRACT
BACKGROUND: Digital health innovations are frequently used to support people in managing chronic health conditions. Stroke is common, and people who have survived a stroke and live in the community must learn to manage their health independently. Digital tools can help, but only if designed to match survivors' specific needs. In response to a need expressed by people living with chronic health conditions, the Australian government created a funding stream to support the development of a digital resource to help individuals gain confidence in managing their health.
OBJECTIVE: This study aimed to co-design a digital resource to promote self-efficacy to manage life after stroke in community-dwelling survivors of stroke.
METHODS: Co-design methodology, which emphasized meaningful engagement with intended end-users throughout the design of the website, was used. The project steering group comprised health professional researchers, digital designers, people with lived experience of stroke (survivors and carers), and representatives from the Stroke Foundation (Australia). A systematic review was conducted to inform the core components of the resource. A lived experience workgroup was convened to advise on features of the digital resource and aspects of its evaluation. Iterative review stages and frequent consultation between the steering group and the lived experience workgroup occurred. Online and in-person usability testing was conducted with survivors and carers.
RESULTS: The lived experience workgroup (workgroup) initially comprised 14 survivors and 1 carer. In total, 11 survivors and 1 carer remained engaged throughout the co-design period. One workgroup member was invited to join the steering group and co-facilitated all co-design workgroup meetings. Defining features of the digital resource were identified by the steering group and the workgroup, including that the resource would be a website that augmented (not reproduced) existing resources, and it needed to be accessible to survivors of stroke with communication changes. Website specifications were determined by the workgroup and included that information needed to be tailored to the individual user, and specific accessibility features were recommended. The workgroup prioritized what content to include on the website and recommended the creation of video stories by Australian survivors and carers. A resource-tailoring tool was created so information could be individualized to the interests of the website user. Overall, 9 web pages containing high-priority content were created, comprising text, video stories, and a downloadable PDF that summarized key information for that page. More than 150 short video stories were created by 26 survivors of stroke and 10 carers for the website. Usability testing indicated that the website was more usable than 83% of all websites.
CONCLUSIONS: Authentic co-design with inclusion of people with lived experience of stroke at all stages of development enabled the successful build of a digital resource (website) to improve self-efficacy. An evaluation of the website is underway.
TRIAL REGISTRATION: Australia New Zealand Clinical Trials Registry ACTRN12624001018505; https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=388255.
PMID:41817131 | DOI:10.2196/76756