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ENVIRONMENT

Connecting in the acute setting


Part 1: The therapists story
Little did Barbara Hegarty know when she became a volunteer conversation partner with the communication disabilities network Connect that the experience would inspire her to become an agent for change for people with aphasia in an acute environment.
phasia is a life altering condition that can strike suddenly, leaving the person with aphasia confused, depressed and unable to express their fears and sense of loss. Kagan (1995) observed that the skills and competencies of the person with aphasia were often hidden by their communication difficulties. These observations led Kagan to develop a supported conversation approach to aphasia therapy. Kagan advocated the concept and use of communication ramps and suggested that the environment be adapted to meet the needs of the person with aphasia. These environmental adaptations included the training of skilled communication partners and the development of conversation resources to allow the person with aphasia to contribute to daily decision making and improve their psychosocial well being and the quality of their lives.

REPRODUCED BY KIND PERMISSION OF CONNECT

READ THIS IF YOU WANT TO UNCOVER THE SKILLS AND COMPETENCIES OF CLIENTS INCREASE CLIENTS COMMUNICATION OPPORTUNITIES HARNESS THE COMMITMENT OF VOLUNTEERS

On commencing work as a speech and language therapist in the acute stroke unit of a large inner city teaching hospital, I was struck by the constraints of the environment on the communication opportunities for people with aphasia. Imagine a world where conversation was denied to you - not because you lacked the will, but because you lacked the opportunity. In response to the challenges imposed by the acute hospital environment, I decided to pilot the use of the techniques and principles of supported conversation. The results illustrate the rich possibilities to clients of this type of approach at an early stage in their treatment. Most importantly, our experience shows that it can be done in spite of staff shortages and the current NHS financial climate, and that there are benefits to both clients and speech and language therapy services.

This pilot project was inspired primarily by my experience as a volunteer conversation partner on an outreach project with Connect the communication disabilities network. In 2002, Sally McVicker from Connect had introduced the idea of volunteers visiting people with aphasia in their own homes, with the aim of using conversation to increase their confidence and participation in social activities. At that time I was a newly qualified speech and language therapist looking for practical experience working with adults before deciding which direction to take in my new career. The other volunteers came from diverse backgrounds and were asked to commit to a six month period of weekly visits to the home of their conversation partner. We attended six hours of training at Connect that included information on disability equality, health and safety and aphasia. The training also covered the skills and personal attributes that are helpful when communicating with a person with aphasia such as reflecting back behaviours and information to check you are both on the same lines, having props to hand to help out and being natural in your conversation at all times. Following the training, we were introduced to our conversation partner by the community speech and language therapist. Boundaries were discussed and agreed, and then we began our journey into the world of supported conversation together.
SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2006

ENVIRONMENT

Table 1 Features of conversation partner scheme across settings Connect - Community Model Differences Home based Mainly 1-2 years post-onset Medically stable No formal therapy Potential participation in functional activities Potential to access community and social activities Similarities Isolation due to physical and / or communication impairment Depression and low mood Reduced confidence and sense of self Feeling of loss of control over ones life Training Six hours of training Contract signed with agreement to visit the client at a set time weekly for an hour for a 6 month period Training covered disability equality, health and safety and general conversation skills Paired with a local speech and language therapist and a person with dysphasia Initial introduction with speech and language therapist and client to set boundaries and set goals Written feedback forms and monthly meeting with project manager at Connect

Adaptations for Acute Service Delivery Acute ward based - mostly acute stroke unit Immediately post-onset Often acutely unwell Intensive multidisciplinary team involvement Severely reduced opportunities to participate in functional tasks Limited access to social activities

Isolation due to physical and / or communication impairment Depression and low mood Reduced confidence and sense of self Feeling of loss of control over ones life

Initial one hour meeting including video and discussion of total communication techniques Flexibility in session timing and length required to accommodate clients medical instability; aim was for a weekly visit Home study of the training pack, including overview of aphasia and conversation techniques Paired the volunteer with 3-4 clients Speech and language therapist modelled conversation with client in the acute ward setting and volunteer observed supported conversation techniques Diaries, email and text messaging used for feedback and support. Written feedback forms placed in folder in speech and language therapy department weekly.

A lot of laughter
According to Zeldin (1998), Dostoyevsky claimed that it doesnt matter what people say, only how they laugh. My experience of being a conversation partner did indeed involve a lot of laughter and reminded me that conversation is much more than just sending and receiving information. Real conversation brings people and ideas together and can change the way we see the world. However, a conversation for a person with aphasia in the period immediately following a stroke can be a very demanding and frightening experience. I was interested in exploring whether the positive communication experience of partnering a person with aphasia at home could be translated into the very different world of an acute hospital setting. So, I set about adapting the Connect conversation partner model into a pilot program that would accommodate the demands of an acute stroke unit. The similarities and differences between the home and acute hospital models and the adaptations we had to make to the training of our conversation partners are in table 1. Firstly, we needed to train appropriate volunteers. Being a large department in an inner city teaching hospital, we are frequently contacted by prospective speech and language therapy students seeking work experience. We are also fortunate in having access to a volunteers bureau which registers and police checks all our voluntary applicants. The conversation partners scheme seemed to provide us with an ideal opportunity to utilise the time and enthusiasm of our long list of volunteers whilst simultaneously providing experience for people interested in pursuing a career in speech and language therapy. Training our volunteers had to be time and cost-effective. We therefore decided to develop a training pack. The training pack included an overview of the aims of the scheme, a basic description of what is involved in a conversation and a copy of an evidence based study (Kagan et al., 2001) describing the benefits of supported conversation. The training pack also included a summary of the effects of stroke on communication, communication strategies and a short video modelling total communication techniques. A starter pack with an alphabet chart, a communication board, maps, paper and pencils and conversation topic suggestions were provided. In addition, we compiled an aphasia friendly letter to enable the person with aphasia to give informed consent for participation in the scheme; none turned the opportunity down. A feedback form allowed the volunteer to give written feedback on helpful resources and the successes and difficulties experienced in their conversation sessions. Following an introductory meeting and reading of the training pack, Leanne, our volunteer for the pilot project, accompanied me onto the acute stroke unit and observed a supported communication session with a person with aphasia. As our case load was extremely fluid, with rapid transfers and discharges, Leanne contacted me at the start of each week thereafter to arrange a list of clients and visiting times. Each week she conversed with one to three conversation partners for ten minutes to an hour. She worked independently and we communicated primarily via feedback forms, e-mail and text messaging. When Leanne asked Tom, one of her conversation partners, Has it been helpful? When I come and talk to you, do you think it helps?, he said: ....yes....because the people I know........youre different, youre friendly...... youre different, I know. Like yesterday, I got....... people just didnt like me .... and I didnt like them! I tell it all straight. I said, Look, I like people. Especially theres [pointing to conversation partner]. Youre /bek...r/ at talking to people. And thats what I love. I love that..... I hope to God that you.... that you still look after me... you or somebody like that. Only sometimes, speech..... wacky stuff! Six months later, and inspired by her experience, Leanne began work as a speech and language therapy assistant. The pilot conversation partner scheme had enabled eight people with aphasia to participate in real life conversations with an unfamiliar listener. This opportunity had given them the confidence to know they could make themselves understood, express their opinions and be themselves in the dark and early days post stroke. There was positive feedback from members of the multidisciplinary team regarding the participants improved self-esteem and confidence. Members of the multidisciplinary team also reported increased use of total communication techniques such as gesturing, writing and drawing in therapy sessions. Most importantly, I felt that our conversation partner scheme enabled our clients with aphasia to participate in real and meaningful conversations for at least a part of their hospital admission. Following the successful pilot we are hoping to extend the scheme into the community by developing a pool of local trained volunteers who can work between our service and the local community. Barbara Hegarty is a speech and language therapist at Charing Cross Hospital, Fulham Palace Road, London W6 8RF, tel. 0208 846 1761. Further information about the conversation partners scheme / Reaching Out project from Connect, tel. 020 7367 0840, www.ukconnect.org.

Acknowledgement
Thanks to the Friends of Charing Cross who have now provided full funding so this project can continue.

References
Kagan, A. (1995) Revealing the competence of aphasic adults through conversation: A challenge to health professionals, Topics in Stroke Rehabilitation 2, pp.15-28. Kagan, A., Black, S., Duchan, J., Simmons-Mackie, N., & Square, P. (2001) Training volunteers as conversation partners using supported conversation for adults with aphasia (SCA): A controlled trial, Journal of Speech, Language and Hearing Research 44, pp. 624-638. Zeldin, T. (1998) Conversation: How Talk Can Change Your Life. London: The Harvill Press.

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2006

ENVIRONMENT

Part 2: The volunteers perspective


Reflecting with Barbara Hegarty on her experience as the volunteer conversation partner for the Charing Cross pilot, Leanne Matheson finds that the real motivation for her is helping people to feel like themselves.
enerally speaking, everyone benefited in some way from the conversation partner scheme. The people with aphasia I was paired with seemed to enjoy having someone spending time with them who was not testing or assessing them in any way. Conversations were generally fairly lighthearted and relaxed. I think having someone who had time to try things out with them to let them practise things - made them more confident. And it gave them something to do, instead of perhaps being a bit bored and looking at the wall all day. I learnt a lot from both the clients and the speech and language therapists. The experience has also made me feel a lot more confident in my ability to communicate with people who have problems with their speech or understanding what is being said to them. And hopefully the speech and language therapists benefited too maybe it freed up a bit of time for them and at the same time also helped improve the communication of their clients. The training pack was good as preparation and gave me some idea of what to expect. The communication guidelines were helpful and gave me some useful tips such as keeping sentences short, using pictures and photographs, and writing down key words - but nothing really prepares you until you are there doing it for yourself. Every conversation I had was so different. Each person was also so different and each person was different on different days, even at different times in the day depending on when I saw them. The time I spent with each partner was unpredictable sometimes only a few minutes if they were unwell or tired was good to be introduced to them by the speech and language therapist and to have the chance to share in that first conversation, or sometimes just to observe and get the measure of the person. I remember for example meeting a man who had had a massive stroke that had left him with no speech other than some sounds. I felt a bit overwhelmed at first but after two or three sessions with the speech and language therapist I had enough confidence (and knew to take in a copy of The Guardian!) to talk to him on my own. We had our ups and downs but, when he transferred to a local nursing home, I continued seeing him once a week. It was over the Christmas period. He died three weeks after the transfer and I was so glad that he had had someone who knew him and that the staff at the nursing home had seen that he could have a good conversation and laugh and enjoy himself. I do wish I had been able to listen to a recording or watch myself on a video having a conversation with one of the partners earlier on. I really learned a lot about how I interact in conversation when I eventually heard myself. There were things I heard myself say that I could have made so much clearer or easier to understand. Listening to our conversation highlighted things I could have developed - and times when I wished I had stopped speaking. I would like to continue being a conversation partner because it makes me feel I can help people to feel like themselves, as shown in this excerpt from a transcript of a conversation I had with a man who was really missing being able to talk to his family, especially his granddaughter, following his stroke: T: Always be the.Always be me, always CP: Thats really what youre missing, isnt it? T: Yeah

or needing to see a doctor or nurse. At other times the session would last much longer, up to an hour or so. I would definitely say that, although its great having a plan for possible conversation topics and resources to support conversation, it doesnt always work out the way you think it will! I did find it easier if I could find a quiet corner as it was generally less busy off the ward and it was easier for my conversation partner to concentrate on the conversation if there was less going on to distract them. But not all of the people with aphasia I talked to were able to leave the ward, or indeed wanted to, and sometimes it was useful to have their things about them such as photographs and cards - as a stimulus or to help us out. I remember one lovely lady who was very distressed when I arrived for our session. The nurses had not been able to find out why. We talked and drew and she kept gesturing towards her handbag and drawing a house and scribbling odd numbers. We eventually communicated the problem successfully - that she was worried her rent was not being paid whilst she was in hospital. I was able to let the speech and language therapist know and she contacted the family and got it sorted out.

Levels of support
I always felt that I could ask anything of the speech and language therapist even really basic things and get good answers and explanations. I felt I needed different levels of support at different times. It was really useful having some background information about a new partner before I met them: what they liked / disliked, names of close family members, a brief medical history. And it

Reaching Out
Sally McVicker of the communication disability network Connect outlines the development of the conversation partner scheme and the subsequent Reaching Out project.
he Connect Conversation Partner Scheme began in 2001, based on inspiration from Jon Lyon, Aura Kagan, Nina Simmons-Mackie and the Life Participation Approach to Aphasia (LPAA) group. The idea of the scheme was to train, support and supervise volunteers to visit people with aphasia in their own homes for the purpose of having supported conversation. The scheme began in 2001 and ran from the Connect London Centre for four years. During this time over one hundred volunteers, including Barbara Hegarty, were trained and supported to visit over one hundred people with aphasia. Feedback from people with aphasia, referrers and volunteers (each followed up by questionnaire)

REFLECTIONS DO I ACTIVELY SEEK TO ADDRESS A CLIENTS AND MY OWN - NEED FOR LAUGHTER? DO I APPRECIATE THE POTENTIAL BENEFITS OF ENGAGING WITH VOLUNTEERS? DO I ENSURE CLIENTS HAVE OPPORTUNITIES TO LEARN AND THEN USE TOTAL COMMUNICATION TECHNIQUES?
Interest in the scheme grew, and in 2003 we launched the Reaching Out project which aimed to work in partnership with other organisations to enable them to deliver a conversation partner scheme in their area. The University of East Anglia was the first partner incorporating the scheme into first year practice. Partners have grown in number across the NHS and Universities within the UK and Eire and now include Bedfordshire Heartlands NHS Trust; Plymouth PCT; Exeter PCT; North Bristol NHS Trust; West Cornwall PCT; the University of Ireland, Galway; Trinity College, Dublin; Manchester Metropolitan University; and recently Canterbury Christ Church University. SLTP
SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2006

was overwhelmingly positive: For people with aphasia, it gave them a chance to talk (90 per cent) and feel more confident (80 per cent). Service providers reported that the service offered a good extension and enhancement to current practice: No question that it does offer long term support and it helps to build confidence that we couldnt otherwise do. Volunteers seemed to learn from and enjoy (90 per cent) the visits: Expected more changes for my partner, but actually changed ME more than my conversation partner: a bit more understanding; just being there asking less.

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