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How I encourage community participation (1):

Any volunteers?

A pilot study of the Personal Development Programme suggests it promotes volunteering and increased activity among people with aphasia, bringing benefits to the individuals and their communities. Gill Pearl and Gill Jackson ask us to consider how we can engage and support people to do more with aphasia.

READ THIS IF YOU WANT TO PROMOTE PERSONALLY MEANINGFUL THERAPY CONFIDENCE, SELF-ESTEEM AND QUALITY OF LIFE THE SOCIAL MODEL OF DISABILITY

espite calls for many years now for increased focus on community participation by people who have aphasia (Sarno, 1993; Hirsch & Holland, 2000; Cruice et al., 2006), it appears their exclusion is still highly prevalent (Parr et al., 1997; Parr, 2004; Steel, 2005). As therapists we have a duty to work with people who have aphasia in a way that promotes more personally meaningful activity, and supports their re-integration and participation in their communities (Kagan, 1993). The great majority of research into access and inclusion for people with aphasia has happened within the last 10 years (SimmonsMackie & Damico, 2007) and the January 2007 issue of Aphasiology (21(1)) was devoted to the subject. Although it is not always clear what individuals consider as meaningful community participation, for some, volunteering is an appealing and appropriate way to spend their time. Volunteering has potential to re-engage people with their communities, to demonstrate and develop skills, and to enhance confidence, self-esteem and quality of life (IVR, 2004). Volunteering is defined as activity that involves spending time, unpaid, doing something that aims to benefit the environment or individuals or groups other than (or in addition to) close relatives (Compact, 2008, p.4). There is recognition that it is beneficial both for those who volunteer and for the organisations hosting the activity. However, until recently, volunteering by people with aphasia has not been given great attention. It is not widely considered as an option either in rehabilitation or in living a more fulfilling life with aphasia. It appears that the small amount of volunteering currently happening for people with aphasia is within or supported by stroke or aphasia specific organisations (Pearl et al., 2006). A recent research project hosted at Manchester University and funded by the Health Foundation explored both the effects of volunteering by people with aphasia

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

(on themselves, on other people and on the organisations hosting the activity) and the influences on volunteering from the perspective of people with aphasia (Pearl et al., 2007). This research gave considerable insight into the perceived processes operating

around this activity and contributed to the development of a conceptual model. The research participants were clear that volunteering was more likely to be successful if there was consideration of the potential positive and negative effects, and forward

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planning to maximise the positive and minimise the negative. As an example, one participant was asked to assist with running activities in a local stroke group. Although this activity itself was within the capabilities of the participant, it was at an inappropriate time (I was too close to the stroke really), of an overlong duration (I got so tired) and did not provide the required communication support. The whole experience left the volunteer reflecting, I felt I was in a mad house. Another participant commented that volunteering within his support group for an activity at the start of the session left him so tired that he was unable to join in with the rest of the day. There was wide recognition that appropriate support is essential and that thinking through the support in advance would have helped to prevent difficulties (next time I would stay overnight; They [the organisers] need to do it differently; it were good but get the support that need). People working with those who have aphasia are in a position to promote volunteering both as part of rehabilitation and as an aspect of community participation. To support these professionals in promoting more or more successful volunteering, we used the conceptual model which developed from the research as the basis of a resource for group discussions.

Figure 1 Activites identified 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

A healthcare professional is routinely seen as a person of expertise. This designation gives them a position of power that derives in part from their ascribed knowledge and skills, but it can also derive from how they behave, communicate and engage with others. Professionals are trained to be aware of their power and its effects. In the context of group discussions that are led by a healthcare professional, there can be an element of compliance. Group members may be more prone to agreeing with suggestions unless the group leader employs strategies to manage

The resource, entitled the Personal Development Programme: Doing more with aphasia, is structured in three sections. The first considers the philosophical issues surrounding approaches to disability. We have included this because the underlying attitudes of those involved in the group undoubtedly affect the quality and content of the discussions. The medical model of disability, which focuses on the impairment, is often dominant amongst healthcare professionals. The philanthropic view is highly prevalent in the voluntary sector and in society at large, and views disability in terms of care and pity. The social model, which has grown from the views of disabled people themselves, offers an alternative. It considers the barriers in society which act to disable, and the identity of each individual as having a right to a unique, integral part of their society. Further reading around this topic would help to give greater insight and understanding of the effects of an individuals approach to disability (Jordan & Kaiser, 1996; Pound et al., 2000; Swain et al., 2004). The social model is concerned with issues of power and liberation from the constraints imposed by society and from those operating with a value base situated in other approaches to disability. The discussions in the Programme involve open and honest debate. It is important therefore to consider the values which drive the process and are manifested in the power relationship between those in the group, the environment and the communication of those involved.

Underlying attitudes

It is essential that attention is given to fine detail. What may seem a small issue to one person can seem an insurmountable barrier to another.
the power relations to maximise participation and minimise compliant responses. One way to achieve these empowerment effects is for the group leader to actively encourage people in the group to consider what is right for them, challenge assumptions, and progress in their own way. Engagement is participation which occurs at a deeper level with more commitment and ownership. Putting inclusive and empowering values into practice means giving consideration to the way barriers presented by the environment prevent participation and engagement. The venue for the group meetings, if selected carefully, can act specifically to support people both to attend and to engage in the meetings. Although some of the suggested adjustments may appear trivial, they are important elements in the bigger picture. It is essential that attention is given to fine detail. What may seem 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 of communication support is essential to foster discussion; this involves both materials to support communication exchange and the skills of the people providing the support (Kagan, 1998). The second section of the Personal Development Programme considers the practicalities of hosting group discussions where the members have aphasia. These considerations may include such aspects as the adoption of group rules for good conversations. Another example is the appropriate timing for meetings to take into account fatigue caused by the effort required to communicate in a group. The Programme contains information about how the principles of fostering participation and engagement can be put into practice. The third section provides structure for the discussions themselves, clustered into six sessions. Each session provides the background for the topic, quotes from the research participants to provide additional insight, complementary resources and finally a DVD which features people with aphasia talking about their experiences of volunteering. These resources can be used flexibly and creatively to stimulate in-depth discussions and assist with planning and decision making for activity for people with aphasia. In summer 2008, Dyscover (an aphasia support and therapy group in Surrey) piloted the Personal Development Programme. The purpose of the pilot study was to evaluate the Programme so we could refine and improve it. We also wanted to evaluate its usefulness from the perspective of the people with aphasia, the staff facilitating the group discussions and the manager of the aphasia centre. In addition we evaluated the outcome of activity changes which occurred as a result of participation in the group discussions. Initially eight people with aphasia as a result of stroke elected to take part in the pilot (five men and three women). Four were clear at the outset that they did not want to volunteer, only to take part in the pilot. All had attended Dyscover for between 18 months and 12 years and were 2.5 - 16 years post stroke. The discussions were facilitated by an experienced aphasia therapist with support

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from two student speech and language therapists. It was necessary to allocate initial time for planning of the group work and evaluation following the discussions, and to schedule time after the end of the Programme to allow for follow-up and further support. Six people completed the course; one dropped out due to health issues, and one following discussion with the staff due to a combination of factors including continuity difficulties from a holiday break, competing interests and the need for more individualised one-to-one support for comprehension. We evaluated the process of taking part. Comments by the six members who completed the course suggest that the activity itself was of value: this is good, you might be surprised what it might lead to Why cant we do this all day? Completion of the course itself was seen to improve confidence, to help with focusing on ability rather than disability, and to demonstrate the ability to make decisions. Each individual chose an activity that they wished to pursue. The activities identified by all members of the group - including those who did not initially want to increase their activity - are in figure 1. that supported purposeful discussions on the theme of volunteering, and they intend to run the programme on a regular basis. The feedback from the pilot study suggests that the Personal Development Programme has potential to support therapists to promote volunteering and other activity as a way of increasing community participation for people with aphasia. After six months of volunteering as a result of attending the group discussions one member of Dyscover has taken on a part-time job, thus demonstrating that volunteering for people with aphasia can be a stepping stone back into employment. There is still much we dont know about the usefulness of the Programme. For example, can it fulfil its potential as part of rehabilitation, would an evaluation in a medical setting reveal different results, is the resource useful in one-to-one discussions, is there a minimum set of requirements before someone can engage in the discussions? However, the small scale pilot study at Dyscover suggests that the resource has potential to encourage volunteering and a wider range of life activities, as well as volunteering which is SLTP more likely to be successful. Speakeasy (www.buryspeakeasy.org.uk) and Dyscover (www.dyscover.org.uk) are specialist aphasia charities in Bury, Lancashire and in Surrey. Gill Pearl and Gill Jackson are their respective Chief Executives. aphasia: Living with the loss of language after stroke. Buckingham: Open University Press. Pearl, G., Young, A. & Sage, K. (2006) Volunteering and people with aphasia in North West England. Pearl, G., Young, A. & Sage, K. (2007) An exploration of the involvement of people with aphasia in service delivery activity. M Phil Thesis. University of Manchester. Pound, C., Parr, S., Lindsay, J. & Woolf, C. (2000) Beyond Aphasia: Therapies For Living With Communication 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 marginalized and excluded people in research, in Lowes, L. & Hulatt, I. (eds.) Involving service users in health and social care research. Routledge: Oxford. Swain, S.F., Barnes, C. & Thomas, C. (2004) Disabling barriers - enabling environments. 2nd edn. London: Sage.

Increased activity

In addition the discussion promoted thought around increased activity not necessarily related to volunteering (it set my mind thinking about gardening), thus demonstrating the potential for the Programme to promote general activity. There appeared to be a perceived value in having structure to the discussions (if they do a course like this they may volunteer sooner; I didnt think of doing voluntary work before; ..focus the mind to think about things otherwise drift forever). The discussions helped staff to understand more fully the perspectives of the people in the group, even those whom they had known for many years. For example, the participants had had a tendency to put on a brave face about the challenges they regularly met and to present a more positive view of their lives to the world. Open discussion through the Programme promoted honesty and therefore the generation of more realistic and appropriate solutions. It assisted staff to structure discussions in a flexible way, and to support discussions to include activity which had not previously been considered, such as helping out in a local residential home. The pilot project resulted in considerable changes to the format of the Programme, condensing it from 10 down to 6 sessions whilst still allowing for expansion back to 10 sessions should time allow. The six participants suggestions for improving the resource were incorporated into the final version. In addition, we re-structured the content to allow simpler navigation around the support resources. All the staff at Dyscover valued the Personal Development Programme as a useful resource

References

Compact (2008) Volunteering: Compact Code of Good Practice. Crown Copyright. Available at: http://www.thecompact.org.uk/shared_asp_ files/GFSR.asp?NodeID=100323 (Accessed: 2 November 2010). Cruice, M., Worrall, L. & Hickson, L. (2006) Perspectives of Quality of Life by People with Aphasia and Their Family: Suggestions for Successful Living, Topics in Stroke Rehabilitation 13, pp.14-24. Hirsch, F.M. & Holland, A.L. (2000) Beyond Activity: Measuring Participation in Society and Quality of Life, in Worrall, L.E. & Frattali, C.M. (eds.) Neurogenic Communication Disorders - A Functional Approach. Thieme: New York. Institute for Volunteering Research (2004) Volunteering for all? Exploring the link between volunteering 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 aphasic adults, in Holland, A.L. & Forbes, M.M. (eds.) Aphasia treatment: World perspectives. San Diego: Singular. Kagan, A. (1998) Supported conversation for adults with aphasia - methods and resources for training conversation partners. Aphasiology 12(9), pp.816-830. Parr, S. (2004) Living with Severe Aphasia - The experience of communication impairment after stroke. Brighton: Pavilion. Parr, S., Byng, S. & Gilpin, S. (1997) Talking about

The Personal Development Programme is available to buy at cost from Speakeasy. For further information please contact Gill Pearl, tel. 01706 825802.

REFLECTIONS DO I SUPPORT CLIENTS TO LIVE A FULFILLING LIFE WITH THEIR COMMUNICATION DIFFICULTY? DO I REALISE THE PERSONAL AND COMMUNITY BENEFITS OF VOLUNTEERING? DO I TRY TO MITIGATE THE EFFECTS OF MY OWN POSITION OF POWER AS A HEALTHCARE PROFESSIONAL?
Do you wish to comment on the impact this article has had on you? See the information about Speech & Language Therapy in Practices Critical Friends at www.speechmag.com/About/Friends.

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