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Portia Woodman

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  1. The things that stop people doing what they want to do post stroke Faculty of Health and Social Care Sciences St George’s: University of London 3 May 2012 Development of a conceptual model of participation post stroke Sharing my story Portia Woodman Diana Marsh

  2. Development of a conceptual model of participation after stroke Advisory Panel Interviews Creating a tool using a group of items which capture issues relating to participation post stroke Conceptual model of participation post stroke Qualitative synthesis Exploring tool with participants

  3. Purpose of this study

  4. Background People with stroke need to be enabled and empowered to live a full autonomous life in the community. (Life after stroke commissioning Guide 2010) In order to accomplish this, people with stroke need assistance to overcome barriers to engage and participate in community activities. (Stroke Strategy 2007)

  5. How is participation experienced by people with stroke? Haggstrom & Lund 2007 Barclay-Goddard, Ripat and Mayo 2011 ‘the engagement in self selected activities that served to promote a sense of inclusion, accomplishment and as a means to stay mentally physically and socially active’


  6. How is the experience of participation post stroke captured? Do we capture this experience? • Stroke survivors measure recovery by participation in activities that brought meaning to their lives pre-stroke (Burton, 2000) How can we capture this? • The best way of capturing the complexity of participation is unknown • According to Noreau et al. (2005) person perceived participation is a more recent concept • As a result there is a paucity of instruments that comprehensively addresses this concept

  7. Why should we capture person perceived participation? • Information on person perceived participation could help stroke services to develop: • better understanding of the person • as well as necessary treatments or support • and could provide information unobtainable by other measures Noreau et al. (2005)

  8. Reasons for undertaking this study • Few examples of the active involvement of people with stroke in the conceptualization and construction of participation instruments. Further research is needed: • To define and capture the experience of participation from the perspective of the person with stroke • To help understand this complex construct

  9. Semi structured interviews using a Grounded theory approach Inclusion Criteria: At least 18 years old Clinically definite diagnosis of stroke Time since diagnosis at least 6 months Four community rehabilitation teams: Sutton and Merton Wandsworth Richmond Hounslow

  10. Summary of Results The things I want to do 12 Participants Gender: 8 Males and 4 Females Aphasia: 6 People Ethnicity: 3 People of Asian ethnicity Age: 27 to 75 years old Mobility: 7 People walked unaided Living situation: 3 People lived alone Time since stroke: 9 months to 13 years Working: 3 People Personal Meaning of doing things Things that stop me Things that help me Changes to me and my life

  11. Personal Meaning of doing things

  12. Things that stop me

  13. Things that help me

  14. Changes to me and my life

  15. Thanks for listeningContact Details:Portia Woodmanp0605934@sgul.ac.uk Supervision Team Dr Fiona Jones Dr Afsane Riazi Professor Ann Mackenzie

  16. Sharing my story Diana Marsh

  17. Work: Manager of a Betting shop Things I wanted to do Theatre Baking Holidays

  18. What does work mean to me?

  19. Things that made work difficult

  20. Tiredness Things that made it difficult Things that helped Changing my routine Building up hours Building up days Structured routine Planning and organising Support from work colleagues and managers Going to bed at 9.30 pm Needing a nap in the afternoon Activities with friends fell away Doing something new makes me tired

  21. Doing things with one hand • Putting my uniform on • Counting the money • Putting up large newspapers on the wall • Sorting paperwork • Stapling and hole punching paper • Using the computer

  22. Difficulty concentrating • Computer work • Concentration makes me tired • Learning new information • Thinking about something I have not done for a while • Reading • Meetings

  23. Transport difficulties • Bad experience with people on the bus • It doesn't look like I need to sit down so people don't offer me a seat • I don't like all the questions from people • Pity off people • Doing it by myself • Walking makes me tired • Busy trains

  24. Things that helped me

  25. My Progress with work:Achieving the impossible

  26. Thanks for listening