09 kate swinburn connect aphasia and outcomes.ppt
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Connect's Model of Peer- led Services & outcome measurement Dr Kate Swinburn
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Transcript of 09 kate swinburn connect aphasia and outcomes.ppt
Connect's Model of Peer-led Services & outcome
measurement
Dr Kate Swinburn
Connect10 year old, voluntary sector organisation
Connect offers: – Services (** = peer led)
• ** Befriending• ** Conversation groups• ** Drop in• ** Counselling • Conversation Partners
– **Local hubs of active citizens– Information and publications– Training health & social care staff – Consultancy– Policy advice – Innovation
London, Cornwall & across the UK
Impact of Aphasia• Aphasia is a language disability restricting
quality of life, participation & opportunity • People with aphasia make up approx. third of
the stroke population• Increased depression, loneliness, reduced
social networks, ability to engage with rehabilitation,
• They are often excluded from research/audit/ service evaluation
• They have no voice• Needs are not known• Aspirations/goals may be set too low• People with aphasia risk being silent & invisible• They are vulnerable adults• Risk of inequality/discrimination in service
provision
How does Connect work?
In partnership with people with stroke & aphasia
People with aphasia – Active Citizens and recipients• Trustees• Staff• Providers of service• Trainers
• Volunteers
What do people with aphasia tell us they want?Good life after stroke service indicators…
• Communication support: from everyone, everywhere • Long term support - specific to their needs• Support to access services - NOT sufficient just to give INFORMATION
about services • Accessible menu of choice and opportunities
e.g. Emotional support • Psychologist, • Counselling, • Peer support schemes, • Groups, • Help lines
• Meaningful roles and activities e.g. being part of an activity/service (groups, drop in, befriending, hubs, training) leading an activity/service
planning an activity/service• Attention to those who are isolated including those in care homes
Good life after stroke service indicators…
• An information and opportunity sign poster • Access to local stroke skilled person to give
practical help• People with aphasia delivering stroke
services• People on stroke service planning team• A register – remain ‘visible’
… all recommended in Life after Stroke guidelines
How can Connect help London commissioners?
• Peer led services specific to people with aphasia:– Support/conversation groups– Befriending – Drop-in– Counselling – Newsletter
• Communication Access Training:for everyone involved with people with stroke & aphasia
• Information and support:– Connect for a day– Conversation Partners – Publications produced by people with aphasia for people with
aphasia and stroke
Connect’s model of peer support
Services? Or a life?
‘More than just speech’
‘about becoming a person again’
‘Not pat, pat; getting something to do in real
life’
Service evaluation with people with aphasia Existing Standardised tools
– Often not acceptable• Focus = physical disability• Focus = lack of impairment/return
of ‘normal function’• Lack of focus participation/identity/QoL
– Often not accessible• Long • Wordy (language dependent)
Process of ‘Assessment’ in the community– Is evaluation the best use of voluntary sector resources?– What’s in it for people with aphasia?– Process can be negative– Assumption of intervention if probe certain areas
BUT...
Evaluation at Connect• ‘Discovery’ project (2005)
– Independent evaluation – Connect services significantly improve
• Communication • Quality of life
• Project based evaluation – Qualitative research and user views – Process evaluation and exploration– Service utilisation
Communication Disability Profile(Swinburn with Byng 2006)
• Patient Reported Outcome Measure – Therapy tool– In depth exploration– Measurement
• Developed over 10 years (with people with aphasia)
• Psychometric data (Reliability & internal consistency established)
• Over 350 sold • International, research and clinical interest
BUT too detailed for impact evaluation
• Patient Reported Outcome Measure • Usable by a variety of administrators • Accessible and Acceptable to people with aphasia• Pictorial Rating Scale• 21 questions
– Communication (4)– Participation in everyday activities including social inclusion (5) – Emotional state including Self Esteem, Optimism (12)
• Versions • Gender
• Ethnic background
Aphasia Impact Questionnaire
Impossible No problem
This week …How easy was it for you to talk to a stranger?
SAMPLE PAGE OF AIQ
Validity results
Significant (p = 0.001)positive correlations in all domains
Agreement • communication
(r = 0.583)
• participation (r = 0.551)
• emotions (r = 0.903 negative)(r = 0.725 positive)
Summary of Impact Data by New Service 05.10.10
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2824 24
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Counselling Conversation Partners Befriendees Drop in Groups Befrienders
New Service
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Issues …
AIQ = PROM accessible & acceptable to people with aphasia
• Beyond Connect
– Widespread interest • Stroke Improvement Programme• Stroke networks• Aphasia Alliance members
– Dissemination of AIQ• Pilot phase• To be confirmed...
Contact details
Services & Consultancy Sally McVicker [email protected]
Shaun Glanville [email protected]
EvaluationKate [email protected]
