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Portia Woodman
Development of a conceptual model of participation post stroke
Diana Marsh
Sharing my story
Faculty of Health and Social Care SciencesSt George’s: University of London3 May 2012
The things that stop people doing what they want to do post stroke
Development of a conceptual model of participation after stroke
InterviewsInterviews
Qualitative synthesis
Qualitative synthesis
Conceptual model of
participation post stroke
Creating a tool using a group of
items which capture issues
relating to participation post
stroke
Creating a tool using a group of
items which capture issues
relating to participation post
stroke
Advisory Panel
Exploring tool with
participants
Exploring tool with
participants
Purpose of this study
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)
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’
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
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)
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
Semi structured interviews using a Grounded theory approach
Inclusion Criteria:At least 18 years oldClinically definite diagnosis of strokeTime since diagnosis at least 6 monthsFour community rehabilitation teams:•Sutton and Merton•Wandsworth•Richmond•Hounslow
Summary of Results 12 ParticipantsGender: 8 Males and 4 FemalesAphasia: 6 PeopleEthnicity: 3 People of Asian ethnicityAge: 27 to 75 years old Mobility: 7 People walked unaidedLiving situation: 3 People lived alone Time since stroke: 9 months to 13 years Working: 3 People
The things I want to do The things I want to do
Personal Meaning of doing things
Personal Meaning of doing things
Things that help me
Things that help me
Things that stop me
Things that stop me
Changes to me and my life Changes to me and my life
Personal Meaning of doing things
Things that stop me
Things that help me
Changes to me and my life
Thanks for listeningContact Details:
Portia [email protected]
Supervision Team
Dr Fiona JonesDr Afsane Riazi
Professor Ann Mackenzie
Sharing my story Diana Marsh
Things I wanted to do
Work: Manager of a Betting shopTheatre
HolidaysBaking
What does work mean to me?
Things that made work difficult
Tiredness
Things that made it difficult Going to bed at 9.30 pmNeeding a nap in the
afternoon Activities with friends fell away Doing something new makes
me tired
Things that helped Changing my routineBuilding up hours Building up days Structured routinePlanning and organisingSupport from work colleagues
and managers
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
Difficulty concentrating
• Computer work • Concentration makes me tired • Learning new information• Thinking about something I have not done for
a while• Reading • Meetings
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
Things that helped me
My Progress with work:Achieving the impossible
Thanks for listening