MyFriendsaremyAnchors - Aphasia Institute · 12/8/2014 · aphasia, ‘fast friends’ Old friends...
Transcript of MyFriendsaremyAnchors - Aphasia Institute · 12/8/2014 · aphasia, ‘fast friends’ Old friends...
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‘My friends are my anchors’: exploring experiences of friendship after aphasia
Disclosures
Financial Relationships • Honorarium from Aphasia Institute• Salaried position Bournemouth University• Paid Consultancy/Training/Mentoring
– St Georges Hospital & Kingston University– Bridges Self Management Social Enterprise– Brunel University London– Connect‐ the communication disability network
• Royalties from publications– Beyond Aphasia– Aphasia Therapy Files (Volumes 1 and 2)
Non‐financial relationships• Friendship & Aphasia Research Group • Voluntary sector groups, e.g. Stroke Association, Different Strokes• Professional organisations
Acknowledgements
• Aphasia Institute
• Professional colleagues
• Colleagues with aphasia
– Aphasia groups and centres
– Participatory Action Research Group
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Outline
• Background – social relationships, social networks; meanings of friendship
• Friendship and aphasia study
• Findings overview
• Friendship and identity
• Practical implications and ideas
Personal, identity,attitudes andfeelings
‘Individuals with adequate social relationships have a 50% greater likelihood of survival compared to those with poor or insufficient social relationships. The magnitude of this effect is comparable with quitting smoking and it exceeds many well‐known risk factors for mortality (e.g., obesity, physical inactivity).’(Holt‐Lunstad, Smith & Bradley Layton, 2010)
‘The bird a nest, the spider a web, man friendship’ William Blake
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Making connections – importance for you?
Who are your friends?
What’s important for you about friends &
friendships?
How & why do you
neglect/nurture your friendships?
How have your
friendships changed over
time?
Meanings of Friendship
Aristotle’s categories of friendship
Friends of utility –colleagues at work, task collaborators
Friends of virtue/ excellence – best friends, soul mates
Friends of pleasure – doing things together e.g. playing tennis,
holidays
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Philosophy and friendship
Potential benefits to people with aphasia?
• Happiness and wellbeing
• Identity and Personal growth
• Support
• Citizenship
• Soul friendship (Montaigne)
• Mirror view vs secrets view (Cocking & Kennett 1998)
• Caring friendship (Kierkegard)
• Politics and friendship (Aristotle & Cicero)
Aphasia and social networks
Evidence of change in social relationships, and social networks
• Parr et al, 1997; Parr, 2007 – changed relationships
• Cruice et al, 2006 – reduced social activities • Hilari and Northcott, 2006 – changed networks• Northcott and Hilari, 2011 – loss of friends; ‘changed social desires’
• Davidson et al, 2008 – people with aphasia vshealthy older people: change in quality and quantity of conversations
Aphasia and social networks/support
Power of social relationships
• Brown et al, 2010; 2013 – positive social relationships key to ‘Living successfully with aphasia’
• Vickers, 2010; Ch’ng et al, 2008 –positive role of peers with aphasia in social participation
• Pound, 2011 – importance of reciprocity and peer support as a foundation of active citizenship
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Friendship and
Aphasia Study
About our project
How do working‐age adults with aphasia define, experienceand understand friendship?
Ways to support people with aphasia and their friends to sustain and develop
friendship
Participatory action research
Participants
• 40 + people with aphasia in total
• 1 to 1 interviews (28)
• Participatory Action Research Group (8)
• Event participants (30)
• Age range 18‐65
• Approx one third with severe aphasia
• Approx one third single and/or living alone
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Methods
‘fast friends’
‘Best friends…the three amigos
…falling behind …a rocky road to get their friendship
back’
Flora … my carer
Findings: Who are your friends ?
Ex work colleagues
My cousinFriends from
school
Findings: Who are your friends?
Carers, therapist, support workers
Work friends
People with aphasia, ‘fast
friends’
Old friends –school, university, family history, activity etc
New friends –volunteering, clubs, activities
Family – partners, cousins, aunts,
children
Self‘Fuck off friends’
Community friends –
neighbours, residents, church, pub
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What happens to friends & friendships – findings overview
• Remain the same
• Changes in quantity – friends disappear; make new friends
• Changes in quality – diminished; deeper
• Changes in priority
the Forest of Friendship model
‘My friends are my anchors’
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‘My friends are my anchors’
Space to be vulnerable
TrustBelief in you Loyalty,
constancy, grounding
‘My friends are my anchors’
My friends are my anchors, do not judge, just there!
My friends are my keys.out from isolation, from exile!We have fun together,even when confidence goes.
My friends are my anchors!(Ireland, 2011)
I have a carer on Tuesday and I have a carer on Tuesday and she is a really good friend because I see her every single Tuesday...I talked to her about the kind of things that maybe upset me or I am confused me a bit. She’s very good’ (Katie)
‘I think of my friends as my anchor (…). My anchors’they are an anchor [hand on chest] for me, erm, when
something (...) .erm, kind of disturbing happens to me erm, that I (…) erm, erm, my confidence goes [holds chest] or erm ooh [flutters fingers on chest] erm, erm, erm, feel
unsteady. Then I think of erm, them [laughs] and [laughs] their voices saying okay, if I told them this what would they
say back (Binda) ?
‘My friends are my anchors and I’m an anchor to my friends …a circuit …A large part of me is aphasia …I kind of don’t budge …so my friends come to me if they want to, you know … kind of listening more ‘
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Friendship and Identity
‘My family were great and everything …but my friends were like fresh air’ (Priya)
‘in the first three years I wasn’t anybody to be with... ...because I didn’t know myself ...erm I wasn’t a friend to anybody’ (Katie)
‘My family honestly does not understand the concept of friends…they don’t see the importance of my friends’ (Binda)
Relationships and identity
Friends
FamilyHealthcare workers
‘Professional people and family they give you a lifebelt and cuddle. But friends give you a space and time to express yourself. They understand you, they know what you like and not like – what make you tick. They can transform your life and confirm your identity’ (Barbara)
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‘Fast Friends’ and peer support
‘the importance of the peer support …has been enormous! the benefit has been far greater than any drugs or … … Erm, it’s so important. It is, you go you can relax. You don’t, you know, you can be yourself whatever you are now. You know, you can be that person. So important. It’s made such a difference to my life’ (Derek)
Friends and biographical continuity
• Biographical disruption (Bury, 1982)
• Biographical flow (Faircloth et al, 2004)
• Life thread model (Ellis‐Hill et al (2008)
Frayed life threads post‐strokeFrom Elllis‐Hill et al, 2008
Friends and biographical continuity
Frayed life threads;life threads joining up From Elllis‐Hill et al, 2008
The role of friends in mending frayed threads, weaving new biographical stories, narrative coherence? (Shadden et al, 2008; Barrow 2014)
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the Forest of Friendship model
Summary of findings
• Meaning of friendship is complex, dynamic and multi‐faceted
• Incredibly important but largely invisible in rehabilitation
• Participatory process of sharing different stories of friendship illuminated both the perils and possibilities of friendship
Friendship in practice
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Friendship and practice –Government health warning!
Access Participation
Information Identity
Friendship possibilities
Ideas from people with aphasia … for people with aphasia
• Take time out from rehabilitation – prioritise relationships too
• Share friendship stories with peers with aphasia –what has helped them stay in touch with friends
• Make an effort• Get out of the house • Let friends know early on e.g. send a card• Don’t make assumptions about ‘negative reactions’ – check whether perceptions of exclusion are real; who is initiating any exclusionary behaviours
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… for friends
• Don’t judge your friends with communication disability too soon
• Be prepared to make an effort – to learn new ways of communicating, to be vulnerable, to get it wrong
• ‘Don’t take it personally’ if people with aphasia get upset . ‘Lighten up!’
• At first try visiting in pairs• Importance of belief in the competence of people with aphasia and having faith that your friends are ‘up for it’
• Be flexible – try new ways to hang out together• http://friendshipandaphasia.weebly.com/stories‐of‐friendship.html
… for family members
• Family are hugely important but friends are important too
• Don’t exclude friends, act as a bridge
• Stay in touch with your own friends – for your own wellbeing and as an important friendship resource to the person with aphasia
• Inform yourself and your family but also equip friends with information about stroke and aphasia
• Balance your role as anchor with the space and opportunity to explore different post‐aphasia identities
… for service providers
• Don’t ignore or exclude friends
• Ask about friends in initial interviews and follow ups; consider those most at risk of friendship loss
• Help people access peer support and persevere if people aren’t keen early on
• Give friends information too
• Offer more information and education about relationships
• Remember family and friends are not ‘all one lump’
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Thoughts and connections for policy makers and commissioners
• Consider the role of friends in self‐management support (Jones et al, 2013)
• Friendship and resilience – friends act as buffers and anchors (Watts, 2010)
• ‘Assessing’ the social landscape – risks, existing opportunities, contexts for new relationships (Jetten et al, 2012)
• Friendship and mental health (Five Ways to Wellbeing) –for people with aphasia and their relatives
• Avoid stereotyping and defining social relationships as burden, caregiving, and one‐way support
• Friends and ‘social rehabilitation’; cost‐savings re long term health outcomes and social inclusion
Five Ways to Wellbeing: Connect Be Active Keep Learning Take Notice Give www.neweconomics.org
www.youngfoundation.org
Some take home thoughts
• Be more aware of friends and friendship
• Don’t medicalise friendship but find creative ways to make it visible and harness the many possibilities (identity, participation, citizenship) it offers
• ‘Communication is only one dimension of friendship’ – keep exploring with people with aphasia how to acknowledge and address other important relational issues
• Participatory approaches – encourage reflection on different ways of being and doing
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Thanks for listening
• More about the project
• www.friendshipandaphasia.weebly.com
Selected Bibliography
• Barnard, J. (2011) The book of friendship. London: Virago
• Brown, K, Davidson,B., Worrall,L & Howe,T. (2013) ‘Making a good time’: The role of friendship in living successfully with aphasia. International Journal of Speech‐Language Pathology, 15 (2) 165‐175.
• Cohen,S. (2004) Social relationships and health. American Psychologist, 59(8), pp 676‐684.
• Davidson, B., Howe, T., Worrall, L., Hickson, L. and Togher, L. (2008) ‘Social participation for older people with aphasia: the impact of communication disability on friendships’, Topics in Stroke Rehabilitation, 15(4), pp. 325‐340.
• Ellis‐Hill,C. , Payne, S. & Ward, C. (2008) Using stroke to explore the Life Thread Model: an alternative approach to rehabilitation. Disability and Rehabilitation, 30(2), pp150‐159
• Jetten, J., Haslam, C. and Haslam, S. A. (eds.) The social cure: identity, health and well‐being. East Sussex: Psychology Press
• Hilari,K. and Northcott,S. (2006). Social support in people with chronic aphasia . Aphasiology, 20(1), pp 17‐36.
• Holt‐Lunstad J, Smith TB, Layton JB (2010) Social Relationships and Mortality Risk: A Meta‐analytic Review. PLoS Med 7(7): e1000316. doi:10.1371/journal.pmed.1000316
• Northcott,S. & Hilari,K (2011) Why do people lose friends after a stroke? International Journal of Language & Communication Disorders, 46 (5) 524‐534
• Pound,C (2011) Reciprocity, resources, and relationships: New discourses in healthcare personal, and social relationships. International Journal of Speech‐Language Pathology, 13(3) 197– 206, 8: 31‐44
• Spencer, L. and Pahl, R. (2006) Rethinking friendship: hidden solidarities today. Princeton: Princeton University Press.
• Vernon, M (2010) The meaning of friendship. Basingstoke: Palgrave Macmillan.
• Vickers,C.P. (2010): Social networks after the onset of aphasia: The impact of aphasia group attendance, Aphasiology,24:6‐8, 902‐913
• Watts, B (2010) Weathering the storm‐negotiating transitions in Britain today. London: The Young Foundation