1. Connect www.ukconnect.org Communication Disability Network Talking it through involving people with communication difficulties in research Alan Hewitt Susie Parr (Connect- the communication disability network)

2. Connect www.ukconnect.org Communication Disability Network What this talk is about … Findings from a study of the experience of people with severe aphasia Involving people with aphasia on the project advisory panel Advisory panel members working together on dissemination

3. Connect www.ukconnect.org Communication Disability Network What is aphasia? A communication difficulty Affects talking, understanding, reading, writing - all forms of communication Varies in severity Commonly occurs after stroke and brain injury

4. Connect www.ukconnect.org Communication Disability Network More about aphasia … Every year, at least 30,000 people in the UK develop aphasia Aphasia is poorly understood, invisible Communication disability

5. Connect www.ukconnect.org Communication Disability Network What is communication disability? Others lack understanding, knowledge and skills to support communication Limited access to opportunities - work, education, social life, engagement with life Reduced access to information

6. Connect www.ukconnect.org Communication Disability Network Life with severe aphasia: a study Funded by The Joseph Rowntree Foundation Aim: to track the social exclusion of people with severe communication impairment

7. Connect www.ukconnect.org Communication Disability Network Methods National survey Ethnographic study of 20 people with severe aphasia In-depth interviews with family members and paid carers

8. Connect www.ukconnect.org Communication Disability Network Ethnography of severe aphasia: methods 20 people with severe aphasia, purposively sampled 3 sessions with each in different settings: pub; swimming; stroke clubs; therapy sessions; home; shopping observation: detailed field-notes; supported interview; artefacts interpretative, methodological and personal notes

9. Connect www.ukconnect.org Communication Disability Network Brenda and the chicken soup ‘ Do you want soup, Brenda?’ asks the nurse. ‘NO’ she says very firmly and places her hand over her mat. She makes her face express disgust. Her purse and a glasses case are lying by her mat. The nurse gives some soup to the woman on Brenda’s left, who lifts it from her mat and places it in the centre of the table. It is getting very hot. The windows are closed and there is a smell of urine. Brenda looks at me then makes the same disgusted face, then smiles. Today’s menu is written on the white-board by the door. This is chicken soup. I see a nurse at another table where three women are sitting, pouring the soup from the plastic cups into ceramic bowls for them. This doesn’t happen for anyone else in the room. The soup doesn’t look or smell very appetising. It smells like a packet mix. Its appearance is not helped by the plastic cups, pretty much the same colour as the contents. Artefact: The leaflet on the care home says the following: ‘Comfort and service… excellent catering and a wide menu choice provided by a qualified chef using in-house facilities and fresh produce….’

10. Connect www.ukconnect.org Communication Disability Network Social exclusion Communication Access to opportunity and choice Being involved Environment: the nature of the place Respect and acknowledgement … all interacting and influencing each other

11. Connect www.ukconnect.org Communication Disability Network When talking, understanding, reading and writing are difficult: challenges for research Information and consent Administration Interviews Feedback Dissemination Advisory group

12. Connect www.ukconnect.org Communication Disability Network Working with the advisory panel Longer meetings with breaks Shorter agendas and aphasia friendly briefing notes Accessible minutes (key points, illustrations, lay out) Small groups outside the large advisory panel Taped transcripts Communication facilitators “On-line” flipchart and drawing support Red cards

13. Connect www.ukconnect.org Communication Disability Network Dissemination – or ‘getting it out there’ Formal report and findings for Long Academic language Abstract: paradoxes, dilemmas, subtleties Theoretical: social model of disability, social exclusion (www.jrf.org)www.jrf.org … inaccessible to the people with aphasia it is about

14. Connect www.ukconnect.org Communication Disability Network Formal report

15. Connect www.ukconnect.org Communication Disability Network Making an ‘accessible report’ Key points honed down and emphasised Straightforward language Careful layout and design Easy to get around Illustrations Stories illustrating themes … Alan and Susie working together, batting back and forth

16. Connect www.ukconnect.org Communication Disability Network ‘Accessible’ report

17. Connect www.ukconnect.org Communication Disability Network

19. Disseminating differently: learning points for us… Harder than you think Time to boil things down and clarify Status of user-friendly dissemination? Complicated production, marketing, distribution issues Other ways of disseminating? Stories are an excellent teaching tool

20. Connect www.ukconnect.org Communication Disability Network …and points for people with aphasia Know what you’re going into Make sure you know what communication support you will get Ensure that you know the progress of the project from day one Ensure you can be fed back the outcomes of the research in a way you can understand

21. Connect www.ukconnect.org Communication Disability Network Making research accessible Process: continuous, on-going and complex interaction Time (not ‘quick and dirty’) ‘Wings’ to project Trying out different forms of dissemination …all major cost and resource issues

22. Connect www.ukconnect.org Communication Disability Network Communication access (www.ukconnect.org) Making meetings accessible (timing, pace, structure) Making documents accessible (content, layout, tone) Providing training Providing support Changing structures and processes Questioning taken-for-granted cultures and.. if it works for people with aphasia, it works for most people