Understanding the Vital Meaning of Wheelchair and Seating ...

Aims of the sessionTo invite you to consciously reflect on the meaning or relevance of thispresentation to your lives as ‘standers or sitters’To share an understanding of the importance and vital meaning ofappropriate wheelchair and seating provision across the lifespan,relevant to the whole of society.To provide examples from service users and providers which expressthis meaning for freedom, survival and appropriate provisionTo give examples of bottlenecks in the system that impact on the paceof wheelchair and seating provision based on research in the Republicof IrelandTo generate debate for a later date26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Healthcare costs billions worldwide annually Funding for human resources, adequate medicalequipment and service provision is a cause forconcern internationally. Mobility devices are seen as the largest group ofassistive technology prescribed each year Provision of WSAT services requires investment,not only in financial capital, but in the overall‘community capital’ to be sustainable26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Investing Community Capital‘the natural, human, social and built capital from which acommunity receives benefits and on which the communityrelies for continues existence’‘…all four types need to be cared for, nurtured and improvedover time.’ (Hart 1997-2006 – www.sustainabilitymeasures.com)26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Articles 20 and 26Highlight the importance of mobility aids. Article 20 deals specifically with personal mobility Article 26 deals with issues of habilitation andrehabilitation. The responsibility of State Parties to take “effectiveand appropriate measures”…to enable “full inclusionand participation in all aspects of life” is explicit.United Nations. Convention on the Rights of Persons with Disabilities 2008, pp 4-19;Accessed from: http://www.who.int/disabilities/technology/en/index.html 21st May 2009.26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Who Cares?“Mobility and movement are core to peoplesidentities, life experiences and opportunities"Imrie (2000, p.1645)Is it for them or us or all of us?26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Anyone canbecome aWheelchair User70 millionwheelchair users,35,000 650,00020 millionwaiting forwheelchairs31,400 plus8,900needing630(0.6%)26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

It’s my skin, It’s my legs“But it’s crucial, as I said, it’s my legs, I can’t go, I can’t go. It’slike once the chair stops, it’s like cutting my two legs off, Ican’t do anything”. [U5, p.9, Data Set 1]“It has a lot of impact. I hate to say it but, it would be like if Icut your legs off, you can’t walk. If you cut my wheels off Ican’t move.” [U7, p.9, Data Set 1]“I sometimes get pissed off with it. It’s like part of my skinnow” [U3, p.15, Data Set 1]26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Her legs (daughter); my life (mother); ourlife (family)“Em and I see it as Alice’s legs, the wheelchair as Alice’s legs and it’s suchan important part of her.” [U8, p.7, Data Set 1]“So the wheelchair is a massive part of my life you know. …It’s vital I feel,without the wheelchair, we can’t really function effectively as a family. Sothe role of the wheelchair is massive in our house anyway. So she’s gone offto school now.” [U8, p.9, Data Set 1]26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Sustainable Wheelchair & Seating ProvisionMeeting Peoples’ Primary NeedsNow and In the FutureMy skinmy legs (user)her legs (daughter)my life (mother)our life (family)Our Freedom© Rosemary Joan Gowran2011

Building SustainableWheelchair & SeatingProvision Systems Needs to bePrioritisedWheelchair provision “an overall term used for wheelchair design,production, supply and service delivery” (WHO, 2008, p.11)Appropriate wheelchair “a wheelchair that meets the users needs andenvironmental conditions; provides proper fit and postural support; is safe anddurable; is available in the country and can be obtained and maintained andservices sustained in the country at the most economical and affordableprice.” (WHO, 2008, p.11)It is a complex system!26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

WSAT is a Primary Assistive Technology under theAssistive Technology UmbrellaWhy?It cannot be replaced with the assistance of anotherhuman being.‘ensure betterhealth andquality of life’(WHO 2008, p.9).‘catalyst toincrease[d]independence’ (WHO 2008, p.23)‘crucial to shift thebalance of care’ (ScottishGovernment National Health Service 2009,p.1).26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Wheelchair and Seating Assistive Technology(WSAT)‘An enabler both extrinsically and intrinsically forpeople with short-term and permanent posture andmobility impairments of body functions and structuresto actively participate across their life span in everydayliving. The type and complexity of the wheelchair andseating technology provided will depend on thelimitations and restrictions caused to individuals’posture and mobility to personally participate withintheir desired environment and context.’ (Gowran 2012,p.2)Gowran, R.J. (2012) Guest Editorial –, Irish Journal of Occupational Therapy Special EditionWheelchair and Seating Provision 39(2), p.226/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Questions Is WSAT provision Valued sufficiently?– Provision is seen as Essential What is the Vital meaning to Stakeholders involved?– Communication & Understanding Are there enough Viable resources?– Need Vs. Funding What are the Visible long-term benefits?– Fire Fighting Vs. Sustainability26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Four Key PillarsUtilising Organisational Ethnography within a Soft Systemsframework in partnership with SeatTech Enable Ireland as thehost institution.1. Stakeholder Identification (Observation 7mths)2. Understanding Perspectives (Interviews (n=35 )&Workshop 1(n=24), 7mths)3. Meaningful Collaboration (Workshops 2-6, (n=9), 6mths)4. Strategy Development on going (Workshop 7 (n=17)26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Identified key people and engaged with them (n=35)Inside & Outside Enable IrelandUser groupEI OutreachSeatTechInside Enable IrelandIMBEI ManagementSeatTechNDAMedicalConsultantManufacturers/SuppliersEI ATOutside Enable IrelandCOTMNGO26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

‘The Waiting Game – a waiting game to test your patience’…but then you have a happy person andthen sometimes it doesn’t go quite as planned so you have to start all over again.’© Rosemary Joan Gowran2011

Children waitingFailure of the community services to ‘addressthe urgency’ for children with complex wheelchairand seating needs© Rosemary Joan Gowran2011“To squash her into a wheelchair, that’s too small for her now, so ifthat one thing was, as a parent, if that was one of the em things wecould achieve in your study, I would be delighted. No prolonged waitfor children, who have already ye know, the challenges they face, arebig enough, why would you, it’s actually doable. That doesn’t have tohappen, that’s an action that can be taken. Alice is coming out ofthat chair in 3 months time because she is going to be squashed.Have the new chair ready. Very simple! In my head it’s very simple.But actually the process is not very simple, ye know so. Yeah, I’d loveyou to see her actually, love you to see her squashed into her chair.”[U8, p.19, Data Set 1]26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Key areas development Waiting times throughout the flow of theservice Funding, its utilisation Follow up & management Breakdown / Repair and EmergencyServices Common language / Communication Education for all Research & development Establishing responsibilities and activepartnerships Regulating Procurement26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Adults – poor back up© Rosemary Joan Gowran2011Alluding to the fact that he could end up starving,dehydrated and soiled, this is what he said,“Yeah the chair broke down, a couple of breakdowns lastweek, I couldn’t even get home. The battery on thisstopped at the gates. I couldn’t even get on the bus. Eh,so that was scary and em. I’m lucky I still live at homebut, if I was to live eh totally independent. I’d be totallystuck…Ye know. Wouldn’t be able to feed myself or dothe toilet or get a drink of water. Ye know that’s how bad itwould be you know? [U4, p.2, Data Set 1]26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Strategy for a Sustainable Wheelchair &Seating Provision Process Cluster 1: Access to Services(criteria, geographical boundary) Cluster 2: Assessment and Delivery Cluster 3: Tracing, Tracking and TakingCare of Equipment Cluster 4: Education and Research26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Sustainability IndicatorsDPSIR frameworkDriverNeed forseating &mobilityResponsePolicy &TargetsPressureMeeting theneedStateHow we dothis - QualityImpactHow wellwe dothis26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Sustainability indicator Indicators are used to describe what weare trying to achieve and what we aretrying to monitor over time.Example:Prevalence of Waiting times at each stageof the process and the impact on theservice user.(Item that needs to be balanced in order for the system to besustained across the lifespan)26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Older people – disconnectionbetween services and fundingstream“…what’s extremely frustrating is you end up prescribingthe wheelchair and the patient for example will go tonursing home and then there are different rules right, ok,so people may be requiring this, just because they go tonursing home because there is no funding or whateverthen they don’t get it. Even though it makes medicalsense, even though it makes rehab sense, even though it’sgoing to make them more independent in theenvironment. But that’s just the show stopper. That’s it,there is nothing you can do, that is extremely frustrating.”[MC1, p.5, Data Set 10]26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Vital Meaning of WSAT appearsmisunderstoodAppears to be a lack of understanding ofthe urgency for the development ofsustainable provision26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

What next – the way forward Creating a common ground Connect in a shared understanding andcommon language Emphasising this basic human right Put the Vital Meaning of Wheelchair andSeating Assistive Technology to theforeground.26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Visible Mindfulness Creating personal awareness as essential topromote common responsibility… Explicit and tacit social practice needs to be madevisible ‘what is said and what is left unsaid;what is represented and what is assumed.’ (Wenger1998, p.47) Understanding ourselves and others26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Goals Essential for SustainabilityWE need to:Understand appropriate sustainable wheelchair and seating provision as ahuman rights issue.Know Wheelchair and Seating Assistive Technology is a pre-requisite forsurvival.Give voice to the issues faced by people who need to use WSAT,Afford people the choice of participation in life on an equal basis withothers.Establish partnerships as a stakeholder community of practice to developand integrate wheelchair and seating provision system which is deemedessential to achieve the best outcomes.Build a sustainable future for all, where everyone reaps the benefits ofsustainable wheelchair and seating provisionMeet peoples’ primary needs now and in the future26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

"Justice will not be served untilthose who are unaffectedare as outraged as those who are."~Benjamin Franklin26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

Thank YouDr Rosemary Joan Gowran BSc(Hons)OT, MSc OT, PhDLecturer Occupational TherapyCourse Director PGDip/MSc Clinical TherapiesDepartment Clinical TherapiesUniversity of Limerickrosie.gowran@ul.ie26/11/2012Dr Rosemary Joan GowranUniversity of Limerick

ReferencesBell, S. and Morse, S. (2004) Experiences with Sustainability indicators and Stakeholder participation: a casestudy relating to a ‘Blue Plan’ Project in Malta. Sustainable Development, 12, 1-14.Capra, F. (2003) The Hidden Connections-A Science for Sustainable Living, London: Flamingo.Checkland, P., Scholes, J. (1999) Soft Systems Methodology in Action. Chichester: WileyHart 1997-2006 Sustainable Measures, Sustainability indicators [online] availablehttp://www.sustainabilitymeasures.com/idicators/indexhtml [accessed 1 September 2009]Gowran, R.J. (2012) Guest Editorial –, Irish Journal of Occupational Therapy Special Edition Wheelchair andSeating Provision 39(2), p.2Imrie R. Disability and discourses of mobility and movement. Environment and Planning A. p.1645, 2000; 32, pp1641-1656Ireland, Central Statistics Office (2006) National Disability Survey, [online] available:http://www.cso.ie/releasespublications/documents/other_releases/nationaldisability/National%20Disability%20Survey%202006%20First%20Results%20full%20report.pdf [22 Sept 2011]Rousseau-Harrison, K., Rochette, A., Routhier, F., Dessureault, D., Thibault, F. and Odile, C. (2009) Impact ofwheelchair acquisition on social participation. Disability and Rehabilitation 4(5), 344-352.Rousseau-Harrison, K., Rochette, A., Routhier, F., Dessureault, D., Thibault, F. and Odile, C. (2011) Perceivedimpacts of a first wheelchair on social participation. Disability and Rehabilitation: Assistive Technology, Earlyonline, 1-8.Scotland NHS (2009) Wheelchair and seating services modernisation Action Plan Edinburgh, The ScottishGovernment.United Nations. Convention on the Rights of Persons with Disabilities (2008), pp 4-19; Accessed from:http://www.who.int/disabilities/technology/en/index.html 21 st May 2009.Wenger, E (1998) Community of Practice, Learning Meaning, and Identity Cambridge: University Press.World Health Organisation. (2008) Guidelines on the provision of Dr Manual Rosemary Wheelchairs Joan Gowran in less resourcedsettings. Switzerland: WHO Press.26/11/2012 University of Limerick