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SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2010 27

Despite calls for many years now

for increased focus on communityparticipation by people who have aphasia

(Sarno, 1993; Hirsch & Holland, 2000; Cruice et al ., 2006), it appears their exclusion is still highlyprevalent (Parr et al ., 1997; Parr, 2004; Steel, 2005).As therapists we have a duty to work with peoplewho have aphasia in a way that promotes morepersonally meaningful activity, and supportstheir re-integration and participation in theircommunities (Kagan, 1993).

 The great majority of research into accessand inclusion for people with aphasia hashappened within the last 10 years (Simmons-Mackie & Damico, 2007) and the January 2007

issue of Aphasiology (21(1)) was devoted tothe subject.

Although it is not always clear what in-dividuals consider as meaningful communityparticipation, for some, volunteering is anappealing and appropriate way to spend theirtime. Volunteering has potential to re-engagepeople with their communities, to demonstrateand develop skills, and to enhance condence,self-esteem and quality of life (IVR, 2004).

Volunteering is dened as “activitythat involves spending time, unpaid,doing something that aims to benet theenvironment or individuals or groups otherthan (or in addition to) close relatives”(Compact, 2008, p.4). There is recognition thatit is benecial both for those who volunteerand for the organisations hosting the activity.However, until recently, volunteering bypeople with aphasia has not been given greatattention. It is not widely considered as anoption either in rehabilitation or in living amore fullling life with aphasia. It appears thatthe small amount of volunteering currentlyhappening for people with aphasia is withinor supported by stroke or aphasia specicorganisations (Pearl et al., 2006).

A recent research project hosted atManchester University and funded by the

Health Foundation explored both the eectsof volunteering by people with aphasia

(on themselves, on other people and onthe organisations hosting the activity) andthe inuences on volunteering from theperspective of people with aphasia (Pearl et 

al., 2007). This research gave considerableinsight into the perceived processes operating

around this activity and contributed tothe development of a conceptual model. The research participants were clear thatvolunteering was more likely to be successful

if there was consideration of the potentialpositive and negative eects, and forward

How I encourage community participation (1):

READ THIS IF YOUWANT TO PROMOTE• PERSONALLY

MEANINGFUL THERAPY

• CONFIDENCE,SELF-ESTEEM ANDQUALITY OF LIFE

• THE SOCIAL MODELOF DISABILITY

Any volunteers?A pilot study of the Personal Development Programme suggests itpromotes volunteering and increased activity among people withaphasia, bringing benets to the individuals and their communities.Gill Pearl and Gill Jackson ask us to consider how we can engage andsupport people to do more with aphasia.

Gill Pearl (centre) with Joan Morris and David Myles. Joan and David aremembers of Speakeasy, and took part in the volunteering programme.Photo by Martin Stembridge.

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planning to maximise the positive andminimise the negative. As an example, oneparticipant was asked to assist with runningactivities in a local stroke group. Although thisactivity itself was within the capabilities of theparticipant, it was at an inappropriate time(“I was too close to the stroke really”), of anoverlong duration (“I got so tired”) and did notprovide the required communication support.

 The whole experience left the volunteerreecting, “I felt I was in a mad house”.Another participant commented that vol-

unteering within his support group for anactivity at the start of the session left him sotired that he was unable to join in with therest of the day. There was wide recognitionthat appropriate support is essential and thatthinking through the support in advancewould have helped to prevent diculties(“next time I would stay overnight”; “They [theorganisers] need to do it dierently”; “it weregood … but… get the support that need”).

People working with those who haveaphasia are in a position to promote vol-

unteering both as part of rehabilitation andas an aspect of community participation. Tosupport these professionals in promotingmore – or more successful – volunteering, weused the conceptual model which developedfrom the research as the basis of a resource forgroup discussions.

Underlying attitudes The resource, entitled the “Personal Develop-ment Programme: Doing more with aphasia”,is structured in three sections. The rst con-siders the philosophical issues surrounding

approaches to disability. We have includedthis because the underlying attitudes of thoseinvolved in the group undoubtedly aect thequality and content of the discussions. Themedical model of disability, which focuses onthe impairment, is often dominant amongsthealthcare professionals. The philanthropicview is highly prevalent in the voluntary sectorand in society at large, and views disability interms of care and pity. The social model, whichhas grown from the views of disabled peoplethemselves, oers an alternative. It considersthe barriers in society which act to disable,and the identity of each individual as having aright to a unique, integral part of their society.

Further reading around this topic would helpto give greater insight and understandingof the eects of an individual’s approach todisability (Jordan & Kaiser, 1996; Pound et al .,2000; Swain et al ., 2004).

 The social model is concerned with issuesof power and liberation from the constraintsimposed by society and from thoseoperating with a value base situated in otherapproaches to disability. The discussions inthe Programme involve open and honestdebate. It is important therefore to considerthe values which drive the process and aremanifested in the power relationship between

those in the group, the environment and thecommunication of those involved.

A healthcare professional is routinely seenas a person of expertise. This designationgives them a position of power that derivesin part from their ascribed knowledge andskills, but it can also derive from how theybehave, communicate and engage with

others. Professionals are trained to be awareof their power and its eects. In the context of group discussions that are led by a healthcareprofessional, there can be an element of compliance. Group members may be moreprone to agreeing with suggestions unless thegroup leader employs strategies to manage

the power relations to maximise participationand minimise compliant responses. One wayto achieve these empowerment eects isfor the group leader to actively encouragepeople in the group to consider what isright for them, challenge assumptions, andprogress in their own way.

Engagement is participation which occurs

at a deeper level with more commitmentand ownership. Putting inclusive andempowering values into practice meansgiving consideration to the way barrierspresented by the environment preventparticipation and engagement. The venuefor the group meetings, if selected carefully,can act specically to support people bothto attend and to engage in the meetings.Although some of the suggested adjustmentsmay appear trivial, they are importantelements in the bigger picture. It is essentialthat attention is given to ne detail. What mayseem a small issue to one person can seem an

insurmountable barrier to another.As would be expected for a group involving

people with aphasia, the provision ofcommunication support is essential to fosterdiscussion; this involves both materials tosupport communication exchange and theskills of the people providing the support(Kagan, 1998).

 The second section of the PersonalDevelopment Programme considers thepracticalities of hosting group discussionswhere the members have aphasia. Theseconsiderations may include such aspectsas the adoption of group rules for goodconversations. Another example is theappropriate timing for meetings to takeinto account fatigue caused by the eortrequired to communicate in a group. TheProgramme contains information about howthe principles of fostering participation andengagement can be put into practice.

 The third section provides structure forthe discussions themselves, clustered into

six sessions. Each session provides thebackground for the topic, quotes from theresearch participants to provide additionalinsight, complementary resources and nally aDVD which features people with aphasia talkingabout their experiences of volunteering. Theseresources can be used exibly and creatively tostimulate in-depth discussions and assist withplanning and decision making for activity forpeople with aphasia.

In summer 2008, Dyscover (an aphasiasupport and therapy group in Surrey) pilotedthe Personal Development Programme. Thepurpose of the pilot study was to evaluate the

Programme so we could rene and improve it.We also wanted to evaluate its usefulness fromthe perspective of the people with aphasia,the sta facilitating the group discussions andthe manager of the aphasia centre. In additionwe evaluated the outcome of activity changeswhich occurred as a result of participation inthe group discussions.

Initially eight people with aphasia as a resultof stroke elected to take part in the pilot (vemen and three women). Four were clear at theoutset that they did not want to volunteer,only to take part in the pilot. All had attendedDyscover for between 18 months and 12 yearsand were 2.5 - 16 years post stroke.

 The discussions were facilitated by anexperienced aphasia therapist with support

It is essential thatattention is given tone detail. What mayseem a small issue toone person can seem aninsurmountable barrierto another.

Figure 1 Activites identied by all members of the group

• Gardening at the local YMCA sports centre

• Teaching bowls to new members of the bowls club

• Helping at the local Citizens Advice Bureau

• Helping in a charity shop

• Taking on a new role in a Masonic club

• Volunteering at Dyscover

• Making tea in a residential home

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from two student speech and languagetherapists. It was necessary to allocate initialtime for planning of the group work andevaluation following the discussions, and toschedule time after the end of the Programmeto allow for follow-up and further support.

Six people completed the course; onedropped out due to health issues, andone following discussion with the sta 

due to a combination of factors includingcontinuity diculties from a holiday break,competing interests and the need for moreindividualised one-to-one support forcomprehension. We evaluated the process of taking part. Comments by the six memberswho completed the course suggest that theactivity itself was of value:

“this is good, you might be surprised what it might lead to” “Why can’t we do this all day?” 

Completion of the course itself was seento improve condence, to help with focusingon ability rather than disability, and todemonstrate the ability to make decisions.

Each individual chose an activity that theywished to pursue. The activities identied byall members of the group - including thosewho did not initially want to increase theiractivity - are in gure 1.

Increased activityIn addition the discussion promoted thoughtaround increased activity not necessarily re-lated to volunteering (“it set my mind thinkingabout gardening”), thus demonstrating thepotential for the Programme to promotegeneral activity. There appeared to be aperceived value in having structure to the

discussions (“if they do a course like this theymay volunteer sooner”; “I didn’t think of doingvoluntary work before…”; “..focus the mind tothink about things – otherwise drift forever”).

 The discussions helped sta to understandmore fully the perspectives of the people inthe group, even those whom they had knownfor many years. For example, the participantshad had a tendency to put on a brave faceabout the challenges they regularly metand to present a more positive view of theirlives to the world. Open discussion throughthe Programme promoted honesty andtherefore the generation of more realisticand appropriate solutions. It assisted sta tostructure discussions in a exible way, and tosupport discussions to include activity whichhad not previously been considered, such ashelping out in a local residential home.

 The pilot project resulted in considerablechanges to the format of the Programme,condensing it from 10 down to 6 sessionswhilst still allowing for expansion back to 10 sessions should time allow. The sixparticipants’ suggestions for improving theresource were incorporated into the nalversion. In addition, we re-structured thecontent to allow simpler navigation aroundthe support resources.

All the sta at Dyscover valued the PersonalDevelopment Programme as a useful resource

that supported purposeful discussions on thetheme of volunteering, and they intend to runthe programme on a regular basis.

 The feedback from the pilot study suggeststhat the Personal Development Programmehas potential to support therapists to pro-mote volunteering and other activity as away of increasing community participationfor people with aphasia. After six months of 

volunteering as a result of attending the groupdiscussions one member of Dyscover hastaken on a part-time job, thus demonstratingthat volunteering for people with aphasia canbe a stepping stone back into employment.

 There is still much we don’t know about theusefulness of the Programme. For example,can it full its potential as part of rehabilitation,would an evaluation in a medical settingreveal dierent results, is the resource usefulin one-to-one discussions, is there a minimumset of requirements before someone canengage in the discussions? However, thesmall scale pilot study at Dyscover suggeststhat the resource has potential to encourage

volunteering and a wider range of lifeactivities, as well as volunteering which ismore likely to be successful.

Speakeasy (www.buryspeakeasy.org.uk) and Dyscover (www.dyscover.org.uk) are specialist aphasia charities in Bury, Lancashire and inSurrey. Gill Pearl and Gill Jackson are their respective Chief Executives.

ReferencesCompact (2008) Volunteering: Compact Code of Good Practice. Crown Copyright. Available at:http://www.thecompact.org.uk/shared_asp_

les/GFSR.asp?NodeID=100323 (Accessed: 2November 2010).Cruice, M., Worrall, L. & Hickson, L. (2006)‘Perspectives of Quality of Life by People withAphasia and Their Family: Suggestions forSuccessful Living’, Topics in Stroke Rehabilitation 13, pp.14-24.Hirsch, F.M. & Holland, A.L. (2000) ‘BeyondActivity: Measuring Participation in Societyand Quality of Life’, in Worrall, L.E. & Frattali, C.M.(eds.) Neurogenic Communication Disorders - AFunctional Approach. Thieme: New York.Institute for Volunteering Research (2004)Volunteering for all? Exploring the link betweenvolunteering and social exclusion. London:Institute for Volunteering Research.Jordan, K. & Kaiser, W. (1996)  Aphasia - A social approach. London: Chapman and Hall.Kagan, A. (1993) ‘Functional is not enough: Training conversation partners for aphasicadults’, in Holland, A.L. & Forbes, M.M. (eds.) Aphasia treatment: World perspectives. SanDiego: Singular.Kagan, A. (1998) Supported conversation foradults with aphasia - methods and resourcesfor training conversation partners. Aphasiology  12(9), pp.816-830.Parr, S. (2004) Living with Severe Aphasia - Theexperience of communication impairment after 

stroke. Brighton: Pavilion.Parr, S., Byng, S. & Gilpin, S. (1997) Talking about 

aphasia: Living with the loss of language after stroke. Buckingham: Open University Press.Pearl, G., Young, A. & Sage, K. (2006) Volunteeringand people with aphasia in North West England .Pearl, G., Young, A. & Sage, K. (2007)  Anexploration of the involvement of people withaphasia in service delivery activity . M Phil Thesis.University of Manchester.Pound, C., Parr, S., Lindsay, J. & Woolf, C. (2000)

Beyond Aphasia: Therapies For Living WithCommunication Disability . Milton Keynes:Speechmark.Sarno, M.T. (1993) ‘Aphasia rehabilitation:psychosocial and ethical considerations’, Aphasiology 7(4), p.321.Simmons-Mackie, N.N. & Damico, J.S. (2007)‘Access and social inclusion in aphasia:Interactional principles and applications’, Aphasiology 21(1) pp. 81-97.Steel, R. (2005) ‘Actively involving marginalizedand excluded people in research’, in Lowes, L. &Hulatt, I. (eds.) Involving service users in healthand social care research. Routledge: Oxford.Swain, S.F., Barnes, C. & Thomas, C. (2004)

Disabling barriers - enabling environments. 2ndedn. London: Sage.

 The Personal Develop-ment Programme isavailable to buy at costfrom Speakeasy.

For further information

please contact Gill Pearl,tel. 01706 825802.

REFLECTIONS• DO I SUPPORT CLIENTS TO

LIVE A FULFILLING LIFE WITH THEIR COMMUNICATIONDIFFICULTY?

• DO I REALISE THE PERSONAL

AND COMMUNITY BENEFITSOF VOLUNTEERING?

• DO I TRY TO MITIGATE THE EFFECTS OF MY OWNPOSITION OF POWERAS A HEALTHCAREPROFESSIONAL?

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