Inclusive Digital Content for People with Aphasia (INCA)

Digital content is transforming our cultural, social, academic and business lives. Yet not everyone can readily access digital content. The 2.2 million people in the UK who live with a communication impairment face specific challenges. This includes people with aphasia, a language disorder most commonly caused by a stroke. Aphasia can affect people's ability to speak, to understand speech, to read and to write. In severe cases, people may be able to speak only a few words or may have very limited ability to read and write.

The Stroke Association estimates that 350,000 people in the UK are living with the devastating consequences of aphasia. However this community lacks visibility. A strong digital presence could enhance visibility, but people with aphasia do not have a strong digital presence. They are not evident as digital content creators and curators. They struggle with digital content, especially textual content, and with the accessibility of current tools for content creation and consumption. Engaging with digital content involves the creation, dissemination and refashioning of rich digital resources for consumption by others over extended periods of time. No previous work has investigated customised digital tools to enable people with aphasia to participate in content creation and curation in this sense of creating digital artefacts for consumption by others. This is the problem driver for the INCA project.

The overall objective of INCA is to investigate, co-design and trial digital content tools for people with aphasia. The research will focus on two broad groups of users: people who have significant language impairments as a consequence of their aphasia and people who have milder aphasia and therefore less severe language deficits. The research will explore a blended approach to digital content, intertwining the digital and physical worlds. Project partners, the Stroke Association and Dyscover, will host community projects in which the prototype tools are used to create and curate digital content with support from a visual artist; this work will be showcased at the end of the project.

The research approach will emphasise co-creation. Users will participate through co-design workshops. As many co-design techniques are themselves not accessible to people with language impairments, INCA will also deliver co-design techniques for this community. Finally, the research will provide interaction and content design guidelines for "language-light" digital experiences; these will address the specific challenges of content creation.

Who might benefit from this research?
1. People with aphasia will be the primary beneficiaries.
Aphasia presents a significant societal challenge. Worldwide, there are 17 million new strokes every year (Feigin et al, 2014) and about one third of these causes aphasia. In the UK, the Stroke Association (2016) estimates that 26% of strokes occur in people under the age of 65 and that over 350,000 people are living with aphasia. Aphasia is hugely costly to the individual and society. It can cause social exclusion, depression, and loss of friends. Quality of life is typically reduced.

2. People with other communication impairments may also benefit. The Office for Disability Issues estimates that 2.2 million people in the UK are living with a communication impairment. Technology that is accessible to people with aphasia is likely to meet the needs of others with communication difficulties, such as those with developmental speech and language disorders.

3. Providers of rehabilitation services to people with communication disorders, including speech and language therapists and voluntary sector organisations.

4. Members of the digital design community, including user experience and accessibility practitioners and those who provide digital content tools.

5. The cultural sector.

How might they benefit?
1. People with aphasia will gain new technology that will give them greater access to digital media, not just as consumers but as creators and curators of content. This will enhance their digital visibility. This novel route to expression and creativity may help them to reconnect with individuals and wider society. Social exclusion and loss of friendships are devastating consequences of aphasia. This project offers a new route to social interaction, which will be relevant to everyone with aphasia. Those whose access to social contact is further hampered by stroke related mobility problems are particularly likely to benefit.

2. There is good evidence that other disability groups experience barriers to digital participation (Hemsley et al, 2015). These groups will either benefit directly from the technology, or will gain exemplars that can be adapted for their needs.

3. The technologies created by the INCA project will have potential rehabilitation applications. For example, they may help service providers to build treatments that maintain social relationships and engagement, while also promoting access to technology. Such provision is particularly relevant for people in remote areas or with mobility problems, who struggle to access face-to-face services.

4. The problems of aphasia challenge digital inclusion and overcoming them requires novel design solutions. The INCA project will provide the digital design community with a model of how to engage people with communication impairments in design. It will deliver co-design techniques for this purpose. It will provide interaction and content design guidelines for digital designers. These will address the specific challenges of content creation.

5. The arts and creative industries will benefit from contributions made by diverse communities.

References
Feigin VL et al (2014) Global and regional burden of stroke during 1990-2010: findings from the Global Burden of Disease Study 2010. The Lancet, 383, 9913, 245-255.
Hemsley B, Palmer S, Balandin S (2013) Tweet reach: a research protocol for using Twitter to increase information exchange in people with communication disabilities, Dev Neurorehabil, 17(2), 84-9.
Office for Disability Issues (2014) Disability prevalence estimates 2002/03 to 2011/12 (Apr to Mar). Available at: https://www.gov.uk/government/statistics/disability-prevalence-estimates-200203-to-201112-apr-to-mar. [Accessed 10 Oct 2016].
Stroke Association (2016) State of the Nation: Stroke Statistics - January 2016. Available at: https://www.stroke.org.uk/resources/state-nation-stroke-statistics. [Accessed 14 Oct 2016]