Inclusive Digital Content for People with Aphasia (INCA)

Lead Research Organisation: City University London
Department Name: Centre for HCI Design

Abstract

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.

Planned Impact

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]

Publications

10 25 50
 
Description 1. We have created a prototype iPad app that will support people with aphasia in creating digital texts such as short poems.
2. We have learned more about how to design digital technologies for people with aphasia. This guidance has been delivered in presentations, as part of an MSc course and in an accessibility poster.
3. We have learned more about how to involve people with aphasia in design and evaluation activities.
Exploitation Route 1. People with aphasia will be able to use the app to create digital texts that they would not otherwise be able to create.
2. Digital designers will be able to use the design guidance to create more accessible products.
3. Digital designers will be able to use the design and evaluation approaches to include people with aphasia.
Sectors Digital/Communication/Information Technologies (including Software),Education

URL https://blogs.city.ac.uk/inca/outputs/
 
Description Findings have been used in educating current and future digital designers about (a) how to design digital technologies for people with aphasia, and (b) how to include people with aphasia in design and evaluation activities. This has been achieved through sessions delivered to MSc HCI Design students at City, University of London, through presentations to professional digital designers and through a summary "Dos and Don'ts" poster.
First Year Of Impact 2018
Sector Digital/Communication/Information Technologies (including Software),Education
Impact Types Societal

 
Description Digital Technology for People with Aphasia: Delivering Impact
Amount £6,747 (GBP)
Organisation City, University of London 
Sector Academic/University
Country United Kingdom
Start 03/2019 
End 07/2019
 
Description Erasmus visit of project researcher to the University of Siegen 
Organisation University of Siegen
Country Germany 
Sector Academic/University 
PI Contribution The researcher gave two presentations, participated in a workshop and discussed potential future collaborations.
Collaborator Contribution Dr. Claudia Mueller and her research group hosted the researcher's visit.
Impact n/a
Start Year 2018
 
Description Accessibility of Social Media Apps for People with Aphasia - a User Study 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presentation by Abi Roper to the Acquired Brain Injury Clinical Excellence Network Meeting (ABI CEN), at the Royal College of Speech and Language Therapists, May 2018.
Year(s) Of Engagement Activity 2018
 
Description Accessibility of Social Media Apps for People with Aphasia - a User Study. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation at British Aphasiology Society Research Update Meeting, Birmingham, UK. April 2018.
Year(s) Of Engagement Activity 2018
 
Description Designing for Users with Aphasia - Dos and Don'ts. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presentation by Abi Roper at London Accessibility Meetup #15, June 2018.
Year(s) Of Engagement Activity 2018
 
Description Designing with and for people with Aphasia 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact A lecture and workshop activity delivered to students on the MSc HCI Design at City, University of London, March 2018.
Delivered by Tim Neate and Abi Roper.
Year(s) Of Engagement Activity 2018
 
Description Designing with and for people with aphasia 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact A lecture and workshop activity delivered to students on the MSc HCI Design at City, University of London, 6th March 2019.
Delivered by Tim Neate and Abi Roper.
Year(s) Of Engagement Activity 2019
 
Description INCA Project: Inclusive Digital Content for People with Aphasia 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other audiences
Results and Impact Presentation to the Aphasia Research Group at UCL to disseminate information about the INCA project.
Year(s) Of Engagement Activity 2017
 
Description Introduction to the INCA project 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Invited research talk by Abi Roper. Presented at The Walton Centre, Lower Ln, Liverpool L9 7L, Specialist neurological SLT service covering Liverpool and the surrounding area. May 2018.
Year(s) Of Engagement Activity 2018
 
Description Language-Light User Experience Workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Fifteen UX practitioners attended a hands-on workshop to learn about designing digital technologies for people with aphasia. Four people with aphasia helped to deliver the workshop.
Year(s) Of Engagement Activity 2017
 
Description Tangible Co-Design: Including Users with Language Impairments. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presentation at the Centre for HCI Design's annual Open Day. Primary audience was UX professionals.
Year(s) Of Engagement Activity 2018
 
Description The INCA Project: investigating and co-designing digital content creation technologies with people with aphasia 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Postgraduate students
Results and Impact Invited talk by Abi Roper at Birmingham City University SLT Seminar Series.
Year(s) Of Engagement Activity 2018