Aphasia – an information leaflet designed by people with aphasia.

Background information DMU4 is a conversation group for people with aphasia (PWA). It is part of Aphasia Leicester (AL), a stroke support group. In June 2010 the conversation group was asked to give feedback about aphasia friendly information leaflets that had been designed by the local Speech and Language Therapy department. This activity stimulated a lot of discussion within the group. It also proved to be a catalyst for the group to design their own information leaflet. They decided that they would like to produce a leaflet that had two purposes: explaining aphasia and advertising the long term support that AL could provide for PWA. The need for information leaflets about aphasia is supported by research such as the meta-analysis conducted by Smith, Forster and Young (2009) that suggested that only 55% of people with stroke and their carers understood the information they were given in hospital. It is also supported but the Care Quality Commission’s 2011 review of services for people who have had strokes and their carers which reported that only 38% of stroke services involved PWA in the design of their information leaflets.

Leaflet design There were four leaflet design meetings. These meetings were facilitated by a Speech and Language Therapy lecturer. The initial meetings were used to identify the main ideas that the group thought should be incorporated into the information leaflet: how aphasia happened, what goes wrong when aphasia happens, what helps communication and emotions and contact details for Aphasia Leicester. A further two meetings were held to provide the leaflet designer with specific feedback about a first and final draft. Within these feedback meetings the group discussed how the information should be presented. Group members agreed with Hilari & Byng’s (2009) proposition that short sentences and pictographic representations of the main concept were useful. The group were in full agreement that writing needed to be larger than size 12 font and that arial font was the easiest to read. This unequivocal agreement does not support findings of the research review conducted by Howe, Worrall & Hickson’s (2004) that suggested that there was little agreement about how writing should be presented. Discussions were also focussed on the what colours should be used and whether white writing was accessible on a coloured background.

Results This leaflet design activity addresses two of the eight main benefits associated with stroke group membership: accomplishing shared goals and establishing and confirming identity (Legg, Scott & Ellis, 2007). The activity also produced a leaflet, designed by PWA, that will be used to provide information about aphasia and provide a way to signposting voluntary organisation support for PWA and their relatives in the Leicestershire & Rutland area.

References HOWE, T.J., WORRALL, L.E. & HICKSON, M.H. (2004) What is an aphasia-friendly environment? Aphasiology, 18, 11, 1015-1037. HILARI, K & BYNG, S. (2009) Health-related quality of life in people with severe aphasia. International Journal of Language and Communication Disorders, 44, 2, 193-205. LEGG, L., SCOTT, D. & ELLIS, G. (2007) Volunteer stroke service (VSS) groups for patients with communication difficulties after stroke; a qualitative analysis of the value of groups to their users. Clinical Rehabilitation, 21, 794-804. SMITH, J., FORSTER, A. & YOUNG, J. (2009). Cochrane review: information provision for stroke patients and their caregivers. Clinical Rehabilitation, 23, 195-206. 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.