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 Woodmanp0605934@sgul.ac.uk

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