Transcript Talking it through: involving people with communication

Talking it through
involving people with
communication difficulties
in research
Alan Hewitt
Susie Parr
(Connect- the
communication disability
network)
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
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
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
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
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
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
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
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….’
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
Connect www.ukconnect.org
Communication Disability Network
When talking, understanding,
reading and writing are difficult:
challenges for research
•
•
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Information and consent
Administration
Interviews
Feedback
Dissemination
Advisory group
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
Connect www.ukconnect.org
• Red cards
Communication Disability Network
Dissemination –
or ‘getting it out there’
Formal report and findings for
(www.jrf.org)
•Long
•Academic language
•Abstract: paradoxes, dilemmas, subtleties
•Theoretical: social model of disability, social exclusion
… inaccessible to the people with aphasia
it is about
Connect www.ukconnect.org
Communication Disability Network
Formal report
Connect www.ukconnect.org
Communication Disability Network
Making an
‘accessible report’
•
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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
Connect www.ukconnect.org
Communication Disability Network
‘Accessible’ report
Connect www.ukconnect.org
Communication Disability Network
Connect www.ukconnect.org
Communication Disability Network
Connect www.ukconnect.org
Communication Disability Network
Disseminating differently:
learning points for us…
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•
•
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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
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
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
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
Connect www.ukconnect.org
Communication Disability Network