connect communication disability network talking it through involving people with communication...

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)


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


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


More about aphasia …

• Every year, at least 30,000 people in the UK develop aphasia

• Aphasia is poorly understood, invisible

• Communication disability


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


Life with severe aphasia: a study

• Funded by The Joseph Rowntree Foundation

• Aim: to track the social exclusion of people with severe communication impairment


Methods

National survey

Ethnographic study of 20 people with

severe aphasia

In-depth interviews with family

members and paid carers


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


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….’


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


When talking, understanding, reading and writing are difficult:

challenges for research

• Information and consent• Administration• Interviews• Feedback• Dissemination• Advisory group


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


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)

… inaccessible to the people with aphasia it is about

http://www.jrf.org/


Formal report


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


‘Accessible’ report


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


…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


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


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

connect communication disability network talking it through involving people with communication...

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