Connect training Involving people with aphasia in making a tool to discover what living with aphasia is like.

connect trainingwww.ukconnect.org

Involving people with aphasia

in making a tool to

discover what living with

aphasia is like


Thanks to…

• Kings Fund

• PPP Medical Healthcare Foundation

• Connect – the communication disability network


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


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.


Professional phases

1. Writing & trying out the tool

2. User focus groups to see if it looked at the right things, in the right way

Inclusive phases

3. Interviews about what living with aphasia was like

4. Advisory group to guide development

Stages of development


• 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

Stage 1 Writing and piloting the CDP


Writing and piloting

… involvement?Type of involvement 80 people with aphasia- 130 times (some twice)

Writing: No partPiloting: – Responded to questions– Made comments– Not asked their opinion– No part in modifying the

tool– Developer in control

What difference did itmake?

Very little

• Changes made to wording, if it was difficult to understand


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


Focus group… involvement?

Type of involvement

12 people with aphasia

• Consultants

• One off meeting

• Asked opinions

• Got ‘polite responses’ ?• Researcher agenda

• Developer in control


A lot Very useful

Confirmed that what was included was relevant

Ideas about what was missing

Quite liked the format

Pictures suggested


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’


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


A lot Broadened items

included:e.g. things that youwant to do, have to doe.g. things that help orhindere.g. different emotions


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…


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


A lotShaped

Content of itemsWordingFormatScoringTone


So what difference did

people with aphasia make to the

Communication Disability Profile?


(before)

Talk Person closest to you


Impossible Very Difficult OK No difficult problem

4 <-------------> 3 <-------------> 2 <------------> 1 <-----------> 0

x √

(before)


How easy is it for you to talk to…(Mavis)

(after)


(after)An example page


(before)

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


Frustrated

AngryDetermined

(after)an example

page


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


Was an assessment - ‘oh what’s 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)

Measuring in the right way


What did the advisors think?

• Independent researcher asked them -

– ‘did you make a difference to the tool?’

– ‘what did you think of the process?’


• “I think we made a huge difference I think…well I’m not sure it could have been done without us really…it couldn’t have been done without us”

• “I suppose yes… I did agree…I did argues a bit and I can remember when she was quite … a lot of times she was more...oh yes kind of thing…she suddenly…we thought it was perfectly okay to say no - it’s so and so”

Did you make a difference?...


“rewarding… the process of it …was

good…I would do it again…the finished

thing…its gonna be a fantastic resource

…it was a good feeling”

What did you think of the process?


Involving people with aphasia in developing a tool…the 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


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?


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


Lessons learnt…

• Involve people from the start - aim for long term involvement

• Listen with an ‘open agenda’ first

• Don’t think/talk like a researcher/clinician

e.g. language but also consider who benefits at each stage of the process


• 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

Connect training Involving people with aphasia in making a tool to discover what living with aphasia is like.

Documents

involvement of people

recovery of aphasia

impact of aphasia

involvedhow people

type of involvement3

type of involvement27

type of involvement12

aphasia advisory grouppeople