JMIR Publications

ABSTRACT

Background:

Digital health innovations are frequently used to support people to manage 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 support individuals gain confidence in managing their health.

Objective:

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, that 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 Stroke Foundation (Australia). A systematic review was conducted to inform 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 useability testing was conducted with survivors and carers.

Results:

The Lived Experience Workgroup (Workgroup) initially comprised 14 survivors and one carer. 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 be included 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. Nine webpages containing high priority content were created, comprising text, video stories and a downloadable PDF which summarized key information for that page. Over 150 short video stories were created by 26 survivors of stroke and 10 carers for the website.

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. Clinical Trial: ACTRN12624001018505