‘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

Carole.pound@brunel.ac.uk

Questions