friendship is like a painting that is never finished...zi think change for me is like i know what...
TRANSCRIPT
‘Friendship is like a painting that is never finished’: co-constructing knowledge about
friendship and communication disability
INVOLVE Conference 2012
Carole Pound & Cressida Laywood
Introduction About us
About the talk
• Our methods of involving people with communication disability as research participants and co-researchers
• a brief overview of the key research findings
• reflect on how involvement has influenced our research
Memory: its very difficult to think what did we did
last meeting
Status: I lost my job, my
desires, my ambitions. You get
out of the loop!
Mobility: I can’t drive now, I live alone, I have to organize to get
places
Talking & understanding …too fast, too complicated taking in the subtlety
Effort : Everything takes
so long ….its exhausting
I want to be more involved but with aphasia…. I like reading but its difficult…academic
papers!!!!
Emotions: frustration and control…I feel
very raw now, no veneer
Remember also – Everyone is different
Numbers : I live on my own,
appointments, dates, telephone
messages
About our project
How do working-age people with aphasia
experience and understand friendship?
How does the involvement of
people with language impairment influence friendship & aphasia
research?
Participatory action research
Exploratory 12 interviews
Innovation 2 Friendship
events
Evaluation 16 interviews
21 Advisory Group meetings + contact by Skype & Facetime
Some strategies for involving people with aphasia (as interview participants)
Supported conversation
Stones
Extra time
Conversation ramps e.g. diagrams, photos, key word writing and drawing
Stories/ideas from others with aphasia Checking,
verifying, key words
‘fast friends’
‘Best friends…the three amigos
…falling behind …a rocky road to get their friendship
back’
Flora … my
carer
Who are your friends ?
Ex work colleagues
My cousin
Some strategies for involving people with aphasia (as co-researchers)
Time: All day meeting – more time, but never enough!
Summarising and re-capping and revisiting
Shared values, & commitment
Planning re travel, the ‘effort’ of getting to meetings
Friendship events
Visual map – Forest of Friendship diagram
Accessible agenda and notes from meeting
The Friendship Events
How would the research be different
– without the involvement of
people with aphasia?
The research question
The outcomes
The data
The findings and
interpretations
The methods
How has being involved in the project made a difference to you?
Learnt about my
friendships
Giving and learning from others in the
project
Double edged sword Can be emotional – understanding more
about my impairments
Cycling –better mobility
& wellbeing, more energy, getting out
Made me stronger, coping better
through meeting up with friends
Using my skills and having
them acknowledged
What other co-researchers said
its one person …its …the group …committee …it’s the …stimulating Its erm 11 o clock and …I don’t know the agenda and its surprise…its …’oh’ back of the head …and another word and a little …thing and , but it’s a group not one person
HC: when it begun we didn’t know what it was …its like could be anything really … … I quite like the idea of the unknown you know and it was like , like …Star Trek! JJ Beyond ! [laughter] HC: yes , boundaries …the frontiers …
its been hard but I wouldn’t have it any other way …but coming out of that it makes you positive and you can cope better’
‘I think change for me is like I know what …participation research is and now I very …critical other research like you know you have research and they say ‘ooh you know we have to do focus group’ to erm like like …’consult’ people …I don’t like that …lots of research its just guinea pig, guinea pig aren’t they ‘
Conclusions/ key messages About friendship and aphasia
•Friendship is complex, and dynamic – it doesn’t fit neatly into boxes!
•Friendship is very important when you acquire aphasia
•‘Friends and family are not one lump’
•Friendship is very important in rehab and beyond – do healthcare professionals think about it enough?
About involvement and participation
• People with (severe) aphasia can be involved in conversations and interviews & developing theory
• Participatory research lends itself to more creative, flexible methods
• Participatory friendship
Acknowledgements
• Co-researchers with aphasia • Supervisors • Interviewees & artists •Support organisations
Photo of advisory gruop
Thanks for listening
• More about the project
• www.friendshipandaphasia.weebly.com
Questions