09 kate swinburn connect aphasia and outcomes.ppt


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  • We do loads! But peer led services is what we do!
  • Aphasia brings specific issues that commissioners need to address
  • Active citizenship is what we know
  • We consult regularly and widely – this is what PWA said about what would make a good life after stroke service
  • Signposter – not necessarily a HSCP Stress = well done CSL – if recommendations are implemented they have done a great job in supporting people to live successfully with stroke and aphasia
  • Stress the peer led services are run by/for PWA. All services well established. CA training is cascade model. Info (written by and for PWA) and support already there and available, C4D = information and support days, CP = care homes and those at risk of isolation.
  • NOT SELF HELP How does peer support work? Talk through the model … no value judgement about those at one of the continuum or the other all are legitimate roles
  • Go over this very very briefly – just to highlight there is a lot that goes on behind peer support and active citizenship
  • Commissioning should be beyond services and more about access to life …
  • There are specific issues with evaluation in relation to PWA in community – tools and process are questionable
  • Connect has proven its services work
  • This PROM already exists and it really useful for goals setting in the community. Ned this slide as the foundation to the AIQ info too as shows we have done a lot of thinking about this before the AIQ work
  • New tool – useful to many settings
  • Quickly – this is sample page – stripped down, pictorial, not language dependent
  • The important aspect is the level of agreement i.e. how closely are the scores correlated which is given by the correlation coefficient r. Anything greater than 0.5 is usually accepted as reasonable correlation. You might want to explain that the plot shows higher scores on BOSS are associated with higher scores on AIQ. The conclusion is we are very confident that we are measuring what we want to measure in these subjects based on comparison with a ‘gold standard’ measure.
  • High scores indicate significant impact of aphasia on the persons life, low scores show low impact of aphasia. I have ordered these groups of respondents in terms of their active citizenship – with befrienders as the most active as they are supporting other people with aphasia. Indication that it is likely to be sensitive as it picking up changes in a way that we would predict.
  • Still some issues to resolve before this tool is available for widespread dissemination. Needing to resolve the issues and secure funding to support the dissemination process.
  • 28 minutes
  • 09 kate swinburn connect aphasia and outcomes.ppt

    1. 1. Connect's Model of Peer-led Services & outcome measurement Dr Kate Swinburn
    2. 2. Connect 10 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
    3. 3. 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
    4. 4. 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
    5. 5. 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
    6. 6. 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
    7. 7. 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
    8. 8. Connect’s model of peer support
    9. 9. Services? Or a life? ‘More than just speech’ ‘about becoming a person again’ ‘Not pat, pat; getting something to do in real life’
    10. 10. 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...
    11. 11. 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
    12. 12. 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
    13. 13. • 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
    14. 14. Impossible No problem This week … How easy was it for you to talk to a stranger? SAMPLE PAGE OF AIQ
    15. 15. 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)
    16. 16. Summary of Impact Data by New Service 05.10.10 59 50 62 31 22 11 38 35 14 28 24 24 35 28 12 10 4 8 0 10 20 30 40 50 60 70 80 90 100 Communication Participation EmotionalState Communication Participation EmotionalState Communication Participation EmotionalState Communication Participation EmotionalState Communication Participation EmotionalState Communication Participation EmotionalState Counselling Conversation Partners Befriendees Drop in Groups Befrienders New Service Scoreasa%(highscoresmeanworsestates)
    17. 17. 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...
    18. 18. Contact details Services & Consultancy Sally McVicker sallymcvicker@ukconnect.org Shaun Glanville shaunglanville@ukconnect.org Evaluation Kate Swinburn kateswinburn@ukconnect.org