1. connect training www.ukconnect.org Involving people with aphasia in making a tool to discover what living with aphasia is like

2. connect training www.ukconnect.org Thanks to… Kings Fund PPP Medical Healthcare Foundation Connect – the communication disability network

3. connect training www.ukconnect.org 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

4. connect training www.ukconnect.org 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.

5. connect training www.ukconnect.org 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

6. connect training www.ukconnect.org 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

7. connect training www.ukconnect.org 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

8. connect training www.ukconnect.org 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

9. connect training www.ukconnect.org 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

10. connect training www.ukconnect.org 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 ’

11. connect training www.ukconnect.org 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

12. connect training www.ukconnect.org 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…

13. connect training www.ukconnect.org 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

14. connect training www.ukconnect.org So what difference did people with aphasia make to the Communication Disability Profile?

15. connect training www.ukconnect.org (before) Talk Person closest to you

16. connect training www.ukconnect.org Impossible Very Difficult OK No difficult problem 4 3 2 1 0 x √ (before)

17. connect training www.ukconnect.org How easy is it for you to talk to… (Mavis) (after)

18. connect training www.ukconnect.org (after) An example page

19. connect training www.ukconnect.org (before) Frustrated? Sad? Lonely? Unfair? Helpless? Hopeless?

20. connect training www.ukconnect.org Frustrated Angry Determined (after) an example page

21. connect training www.ukconnect.org 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

22. connect training www.ukconnect.org 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

23. connect training www.ukconnect.org What did the advisors think? Independent researcher asked them - –‘did you make a difference to the tool?’ –‘what did you think of the process?’

24. connect training www.ukconnect.org “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?...

25. connect training www.ukconnect.org “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?

26. connect training www.ukconnect.org 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

27. connect training www.ukconnect.org Conflicts Traditional 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?

28. connect training www.ukconnect.org 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

29. connect training www.ukconnect.org 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

30. connect training www.ukconnect.org 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