connect training

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Involving people with aphasia in
making a tool to discover what living with
aphasia is like
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Thanks to

• Kings Fund
• PPP Medical Healthcare Foundation
• Connect the communication disability network

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This talk will cover

• Development of a tool to document what living
  with aphasia is like the Communication
  Disability Profile
• How people with aphasia were involved
• How people with aphasia shaped the tool
• How the tool is better because of the involvement
  of people with aphasia
• Challenges and lessons learnt

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The Communication Disability Profile

• This tool enables the person with
• aphasia and the clinician to explore, but
• also to rate the impact of aphasia.
• A series of questions about life with
• aphasia.
• Answer using a (0-4) rating scale for each
  question.

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Stages of development

• Professional phases
• Writing trying out the tool
• User focus groups to see if it looked at the
  right things, in the right way
• Inclusive phases
• Interviews about what living with aphasia was
  like
• Advisory group to guide development

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Stage 1 Writing and piloting the CDP

• A research project to be able to predict recovery
  of aphasia at one year
• Developed a new assessment - using new knowledge
  about how the brain processes language
• Final section - perspective of the person with
  aphasia

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Writing and piloting involvement?

• Type of involvement
• 80 people with aphasia
• - 130 times (some twice)
• Writing No part
• Piloting
• Responded to questions
• Made comments
• Not asked their opinion
• No part in modifying the tool
• Developer in control

• What difference did it
• make?
• Very little
• Changes made to wording, if it was difficult to
  understand

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Stage 2 Focus groups

• Talk to people with aphasia and clinicians who
  had used the tool -
• Did it look at the right things, in the right
  way?
• 12 people with aphasia
• One-off interview independent researcher
• Check the researcher had got it right

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Focus group involvement?

• Type of involvement
• 12 people with aphasia
• Consultants
• One off meeting
• Asked opinions
• Got polite responses ?
• Researcher agenda
• Developer in control

• What difference did it
• make?
• A lot
• Very useful
• Confirmed that what was included was relevant
• Ideas about what was missing
• Quite liked the format
• Pictures suggested

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Stage 3 In-depth interviews

• Detailed interviews with people with recent and
  long standing aphasia
• What is it like to live with aphasia
• 2 group and 15 individual interviews
• Listening with open agenda

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In-depth interviews involvement?

• Type of involvement
• 27 people with aphasia
• Experts
• One-off consultation
• Asked opinion
• Open agenda
• Supplied information
• No part in how information was used

• What difference did it
• make?
• A lot
• Broadened items included
• e.g. things that you
• want to do, have to do
• e.g. things that help or
• hinder
• e.g. different emotions

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Stage 4 Advisory group

• Convened people with aphasia advisory group
• People with long standing aphasia with
• varying degrees of access to language
• Make this tool relevant and user friendly
• Role?
• Initially, advise on how to incorporate pictures
• Soon, advising on content, wording and format
• how to use all the information gained so far

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Advisory group involvement?

• Type of involvement
• 3 people with aphasia
• Advisors
• Year long consultation
• Supplied information
• Guided how the information was used
• Joint control
• Decision making

• What difference did it
• make?
• A lot
• Shaped
• Content of items
• Wording
• Format
• Scoring
• Tone

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So what difference did people with
aphasia make to the Communication Disability
Profile?
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(before)

• Talk
• Person closest to you

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(before)

• Impossible Very Difficult OK
  No difficult problem
• 4 lt-------------gt 3 lt-------------gt 2
  lt------------gt 1 lt-----------gt 0
• x v

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How easy is it for you to talk to(Mavis)
(after)
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(after) An example page
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(before)

• Frustrated?
• Sad?
• Lonely?
• Unfair?
• Helpless?
• Hopeless?

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(after)an example page
Frustrated
Determined
Angry
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Measuring the right things?

• More real life situations explored
• CDP now truer to what the real impact of living
  with aphasia is like (as described in the
  interviews and during the advisory group)
• More emotions one third positive
• External issues are now considered
• Use of ? opens up the agenda

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Measuring in the right way

• Was an assessment - oh whats this? (pictures)
• Neutral tone
• Old version the person with aphasia had the
  problem
• New version things and people around them make
  it easier or worse
• Easier to use for people with aphasia (field
  testers say)
• More people with aphasia can be asked for their
  experiences (field testers say)

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What did the advisors think?

• Independent researcher asked them -
• did you make a difference to the tool?
• what did you think of the process?

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Did you make a difference?...

• I think we made a huge difference I thinkwell
  Im not sure it could have been done without us
  reallyit couldnt have been done without us
• I suppose yes I did agreeI did argues a bit
  and I can remember when she was quite a lot of
  times she was more...oh yes kind of thingshe
  suddenlywe thought it was perfectly okay to say
  no - its so and so

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What did you think of the process?

• rewarding the process of it was goodI would
  do it againthe finished thingits gonna be a
  fantastic resource it was a good feeling

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Involving people with aphasia in developing a
toolthe benefits

• Users of the CDP (clinicians people with
  aphasia)
• The CDP is now
• - easier to use
• - measures more relevant things
• - in a better, more accessible way
• The developer
• Learnt more about aphasia, about test design
• Took risks
• Had fun
• Advisors

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ConflictsTraditional development access

• An example rating issues
• 1. Should we use numbers words
• (descriptors) or JUST pictures (pictorial)?
• Traditional might say descriptors
• People with aphasia said only pictures
• Specifically no words on rating scale
• Simplicity over precision
• 2. Should we rate at all?

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Challenges?

• Practical
• Time and timing
• Preparation need ramps/props
• Making complex things easy to follow
• (e.g. reliability for decision about rating or
  not, midpoint ratings or not, categorisation for
  social participation)
• Mindset
• Roles?
• Who makes decisions?
• What is most important?
• Trust sharing and combining expertise

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Lessons learnt

• Involve people from the start - aim for long term
  involvement
• Listen with an open agenda first
• Dont think/talk like a researcher/clinician
• e.g. language but also consider who benefits at
  each stage of the process

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• Practicalities
• Allow extra time for each meeting
• Fatigue/timing
• Location
• Use props and ramps always
• Documentation
• Involve people in the big decisions
• A few trusted colleagues are better than large
  numbers of people with less control
• It can be hard work but everyone benefits