People with aphasia creating an aphasia friendly website: The DMU4 experience
Bixley,M., DMU4, Hall, R., Weale, R., Collingwood, J., Marshall, F. & Hamilton, C.
Background Information
The DMU4 Conversation group is part of Aphasia Leicester; a community based, voluntary sector, long term support organisation for People with Aphasia (PWA). Members of DMU4 have experienced being unable to access information about their condition because of the way in which the information is presented. These personal experiences are supported by research such as the Care Quality Commission’s (2011) report that suggested that only 40% of social services in Britain provided information in an accessible way for PWA post stroke. In 2011, DMU4 created a leaflet about aphasia that was designed to be used in acute hospitals to educate stroke survivors, relatives and hospital staff about aphasia (Bixley et al, 2011). This leaflet has been distributed to hospitals, surgeries and Speech and Language Therapy Departments in Leicestershire and Rutland. Last year DMU4 decided that they would like to embark on a new project; creating a website about aphasia that was also accessible to PWA.
Method
The group decided that there were three main factors that needed to guide the construction and structure of the website. Firstly, people with aphasia would appear on the website as aphasia experts. Secondly, navigation around the website should be aphasia friendly, based on visual images and accessible written language. Lastly, members of DMU4 would retain copyright over their own images. For this reason, the site was hosted on “Our DMU Commons” a self organising space that allows users to co construct their own website using open source software.
The content of the website was agreed through group discussions. Following these discussions, nine DMU4 members attended a whole day filming session in which their perceptions of aphasia were recorded. Films were then transcribed and edited into eleven themes using a grounded approach. Skeat & Perry (2007) suggest this approach is useful when investigating information that is not available anywhere else, such as the information presented in this website. Informed consent was elicited through discussions, meetings, film and website screenings and signed agreement.
Results and discussion
The DMU4 website project has two tangible outcomes. The first is that the site will be available to people who want to learn about aphasia. The second is that the resource will be available for Speech and Language Therapy students. Learning activities will enable students to practise recognising and understand aphasia from the perspective of those who live with the loss of language post stroke. The practices of DMU4 are rooted firmly in the social approach to aphasia therapy (Pound, Parr, Lindsay and Woolf, 2000). It is hoped that the website’s third, less measurable, outcome will be a contribution to overcoming the attitudinal and informational barriers that are experienced by PWA post stoke.
References
BIXLEY, M., DMU4 & HAMILTON, C. (2011) Aphasia – an information leaflet designed by people with aphasia. British Aphasiology Society Biennial International Conference Book of Abstracts, 12.
CARE QUALITY COMMISSION (2011) Supporting life after stroke: A review of services for people who have had a stroke and their carers. London: Care Quality Commission.
SKEAT, J. & PERRY, A. (2008). Grounded theory as a method for research in speech and language therapy. International Journal of Language and Communication Disorders, 43, 2, 95-109.
POUND, C., PARR, S., LINDSAY, J. & WOOLF, C. (2000) Beyond Aphasia: Therapies for Living with Communication Disability. Bicester: Winslow
