training

Understanding Rhys

Rhys is a young man with Downs syndrome. When he was referred to speech and language therapy, Karen Leadbitter followed a plan, do, study, act cycle to monitor the impact of her episode of care. Empowering her client to participate in training his own support staff in the use of Makaton appeared to improve the communicative confidence and competence of both parties.

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hys is a young man in his thirties who has Downs syndrome. He lives with two other men, who also have learning disabilities, and they are supported in their home by a team of around eight members of staff. Rhys works in a local caf throughout the week, participates in a range of social activities in the evenings, and enjoys seeing his family at weekends. Rhys lives in a bilingual community in North Wales and his first language is Welsh, but he also understands and uses some English words depending on the message he is trying to communicate and the people he is communicating with. Rhys receives support from the Integrated Learning Disabilities Service. He was referred to speech and language therapy in November 2009 by his social worker following a review. Support staff had reported his speech clarity was poor, and that Rhys was becoming increasingly frustrated by his difficulty communicating basic messages successfully. I used a Plan-Do-Study-Act cycle (NHS Institute for Innovation and Improvement, 2008) to structure and monitor the impact of my episode of care:

Detailed Test of Comprehension (Masidlover & Knowles, 1982), which I translated into Welsh. Language comprehension Rhys was able to process information at a 3 key word level within a quiet environment with limited distractions. However, it was evident that his understanding of language was significantly reduced within conversation and he often relied on contextual information to support his understanding of what was being said. Language expression Rhys was able to express himself at a 1 to 2 word level. His expression was characterised by a large amount of jargon, with Rhys frequently linking words with jargon. I noted that he was often able to pronounce words related to his favourite topics very clearly. Non-verbal communication Rhys used appropriate tone of voice and intonation within the jargon to help apply meaning to his conversation. He also used a range of gestures and personal signs to communicate topics that are important to him. Within assessment, he showed an ability to copy signs successfully with little prompting needed. Although staff were unaware whether Rhys had used Makaton in the past, it is likely that he would have encountered it while at school. Social communication I saw that Rhys is a very sociable young man who enjoys the company of others. He also

enjoys jokes and used his tone of voice and gestures to have a laugh with staff. Finally, I asked staff to complete a questionnaire (figures 1-7) to provide information in relation to their perception of Rhyss communication abilities and their own communication skills.

2. DO (intervention)
Training session 1 Goal setting I held an initial meeting to gain information from the staff group, and to encourage them to identify the goals they wanted to achieve. Kelly (2000, p.240) cites Clements & Zarkowska (1994) as saying, the more actively that the learner is involved in the training process the more likely that learning will occur, and I guided staff to lead the session to maximise learner involvement. I gathered information in relation to Rhyss Means, Reasons and Opportunities for communicating (Money & Thurman, 1994). This was also an opportunity for staff to share their experiences, observations and the strategies they use to support Rhyss communication. The staff then selected vocabulary that corresponded to Rhyss interests and motivators (reasons and opportunities) and I demonstrated and practised the corresponding Makaton signs or appropriate gestures with them. I wrote up the information gathered from this session and shared it with the support staff and Rhyss social worker.

1. PLAN (assessment)

I gathered information about Rhyss communication through discussion with his key worker and informal observations of him interacting with staff at his home. I then assessed Rhyss language comprehension levels using the non-standardised Derbyshire

SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2011

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Figure 2 Faint o hyderus ydych chi yn teimlo wrth sgwrsio hefo Rhys? / How confident do you feel when chatting with Rhys? Pre-training Ddim yn hyderus / Not confident Yn hyderus weithiau / Confident sometimes Yn weddol hyderus / Fairly confident Yn hyderus rhan amlaf / Usually confident Yn hyderus iawn / Very Confident 0 2 1 2 3 Post-training 0 1 0 4 3

Figure 1 Pa arwyddion mae Rhys yn ddefnyddio yn aml o fewn sgwrs hefo chi? / Which signs/gestures does Rhys use regularly within conversations with you? Pre-training TV Cinema Popcorn Post-training Hello (5) Drink (2) Cinema (2) Food Good (3) Xbox (2) TV (2) Bye (3) Work Cocopops Bad Shower Bowling

Figure 3 Faint o hyderus ydych chi yn teimlo am arwyddo hefo Rhys o fewn sgwrs? / How confident do you feel about signing while chatting with Rhys? Pre-training Dim Ymateb/No Response Ddim yn hyderus / Not confident Yn hyderus weithiau / Confident sometimes Yn weddol hyderus / Fairly confident Yn hyderus rhan amlaf / Usually confident Yn hyderus iawn / Very Confident 2 1 0 2 3 0 Post-training 0 0 0 4 1 3

Figure 5 Beth fydd Rhys yn gwneud pan maen cael trafferth rhoi neges drosodd i chi? / What does Rhys do when he has difficulty getting his message across? Pre-training Walk away Anger Frustration Gestures Post-training Gesture Repeat Slow down Anger Forget it

Figure 4 Faint o lwyddiannus ydi Rhys i gael ei neges drosodd? / How successful is Rhys at getting his message across? Pre-training Ddim yn llwyddiannus / Not successful Yn llwyddiannus weithiau / Successful sometimes Yn weddol lwyddiannus / Fairly successful Yn llwyddiannus rhan amlaf / Usually successful Yn llwyddiannus iawn / Very successful 0 6 2 0 0 Post-training 0 4 1 2 1

Figure 6 Pa strategaethau ydych chin defnyddio pan fyddwch yn cael trafferth deall Rhys? / Which strategies do you use when you are having difficulty understanding Rhys? Pre-training Repeat Patience Slow down Start again Gestures Point Post-training Wait Repeat Yes/no Use gestures Use Makaton Slow down Body language Eye contact Try 5 top topics

Figure 7 Faint o weithiau'r dydd ar gyfartaledd fyddwch chin defnyddio arwyddion neu ystumiau wrth siarad hefo Rhys? / On average, how often do you use signs or gestures while talking with Rhys in the day? Pre-training Dim Ymateb/No Response Dim o gwbwl / Not at all Weithiau / Sometimes Yn weddol aml / Fairly often Rhan amlaf / Usually Pob tro / Every time 1 0 4 1 2 0 Post-training 0 0 1 2 4 1

In preparation for the second training session, I gathered photographs of Rhys taking part in daily tasks at his workplace, and identified PCS symbols that corresponded to Rhyss leisure activities. Training session 2 In this session with Rhys and his support workers I aimed to teach the identified signs and gestures to Rhys and to staff. I also wanted to provide an opportunity for Rhys to take part in training his staff, and for the staff to practise their own signing skills and develop their understanding of Rhyss signs. I revised the signs and gestures for the vocabulary identified in the previous training session with the group by showing the photograph or symbol to the group demonstrating the sign / gesture that corresponded to the photo / symbol

Figure 8 The second training session game Staff were split into two groups. Both groups were provided with a set of photos and symbols that corresponded with the signs learnt. Rhys and the therapist were seated at the front of the room, facing the groups, with an identical set of photos and symbols out of view of the groups. A card was selected at random and Rhys and the therapist signed what was in the picture without speech. Staff identified the corresponding picture / symbol, and then repeated the sign and said the word. One point was given to the team that was first to identify the picture and make the correct sign. The team with the highest score won.

encouraging the group to make the sign / gesture while saying the word. Some signs were new to Rhys and he required support to copy these. I used physical prompting to help him form the sign - or an approximation of it - independently.

I devised a game (figure 8) to target Rhyss signing skills, the staffs comprehension of Rhyss signs and the staffs own signing skills. To ensure the game would be suitable, I referred to Browns (1992) checklist referenced by Kelly (2000) for advice in planning the

SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2011

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activity. The game provided an opportunity for Rhys to play an active role in training his staff, and also gave them the chance to see him using signs successfully. The staff team also had a large collection of photos of Rhys and leaflets for places they had visited, but these were kept in a photo album on a shelf, and were not used functionally. I provided a talking photo album so Rhys could collect his pictures and leaflets, thus enabling him to communicate about novel events that were not part of his usual daily routine. I also created a photo diary for Rhys using the photographs from the training to help Rhys show people what he has been doing during the week. I hoped these resources would reduce his frustration. own communication skills. They were also a useful tool to measure changes in opinion following the intervention. On reflection, the questionnaires provided lots of qualitative information but did not show whether there was an actual increase in staff signing or in Rhyss use of signs and gestures. It could be argued that a chart to measure the use of signs would help to focus staff on practising their new signing skills, and provide more accurate information about the frequency of signing. I felt this would add pressure to the team, who also had two other gentlemen to care for in the house but, if carrying out this type of training again, I would certainly consider using quantitative measures. I feel the training process was extremely successful. The initial session with the staff provided a rare opportunity for staff to meet, with allocated time to discuss one service user in particular. It also provided staff with an opportunity to share ideas and strategies, as well as to gain a clearer understanding of Rhyss language levels and to learn some useful signs. The second session with Rhys and his staff provided a fun environment for learning. Rhys responded well - he enjoyed being in the company of the staff, and his role in the game. It was also evident that Rhys enjoyed sharing the pictures of him at work. Previously staff could only guess the tasks that Rhys took part in at the caf, so the photos provided him with an opportunity to share new information with the group. The signs and gestures selected by the staff included many signs that Rhys already used with some of them, and was therefore confident in demonstrating. The new signs taught were simple and related to photographs, therefore Rhys quickly understood and was able to copy each sign with little support. Within the game Rhys was able to form the sign for most of the photographs independently. Where photos were not available we used symbols, and it became evident early on that Rhys needed more support to understand these. He also required those signs to be modelled by the therapist. Putting staff into two groups for the game created an element of competition which encouraged teamwork. I encouraged them to observe Rhyss signs and interpret their meaning in order to practise their comprehension of signs, and to recognise approximations if Rhys was unable to form the exact sign. I then encouraged staff to repeat and model the sign back to practise their expressive signing skills. and Makaton signs with Rhys, and that they are adopting new signs in relation to his new interests such as current films. The manager of the house also said that Rhys continues to use the photographic diary and that this has been very useful in supporting conversation. Rhyss parents have been providing additional family photos for the talking photo album, for example when a new baby arrived and following family days out. Rhyss parents and house manager said they have noticed that communication is now more successful and staff report fewer incidents of Rhys becoming frustrated. The next step for the staff team would be for them to attend a certified Makaton course to maintain and develop their current signing skills. It would also be beneficial to have further research into individual service user participation in training their own staff. SLTP Karen Leadbitter is a speech and language therapist with the learning disabilities teams across Gwynedd, email Karen.Leadbitter@ wales.nhs.uk. References Kelly, A. (2000) Working With Adults with a Learning Disability. Milton Keynes: Speechmark. Masidlover, M. & Knowles, D. (1982) Derbyshire Language Scheme. Derby: Derbyshire County Council. Money, D. & Thurman, S. (1994) Talkabout Communication, Bulletin of the College of Speech and Language Therapists 504, pp.12-13. NHS Institute for Innovation and Improvement (2008) Plan, Do, Study, Act (PDSA). Available at: http://www.institute.nhs.uk/quality_and_ service_improvement_tools/quality_and_ service_improvement_tools/plan_do_study_ act.html (Accessed: 10 July 2011). Resource PCS symbols, www.mayer-johnson.co.uk

3. STUDY (evaluation)

Following the training sessions I asked the eight staff to complete the questionnaire again, so I could compare their perceptions before and after the intervention (figures 1-7, p.5). The responses imply that staff increased their understanding of the signs that Rhys uses, and have greater confidence in communicating with him. They also suggest that both Rhys and staff may be using more signs in conversation and understanding each other more successfully. Post training, staff showed a better awareness of the strategies that Rhys uses to try to get his message across, and of the communication strategies they can use with him. The questionnaire also asked Unrhyw sylwadau pellach? Any other comments? Although there were no responses before the training, six staff provided comments after it, and their feedback was very positive. It included: I enjoyed both courses. It was great to see Rhys and staff interacting and learning whilst having fun. The course has definitely been of benefit to me and to Rhys. I understand Rhys much easier when he does use the signs / gestures and it must be better for Rhys to see staff understanding what hes got to say quicker and easier by using the signs. I thoroughly enjoyed both training sessions, especially having Rhys participating and learning with all of the staff. The course has given me an understanding of how to communicate through using hand gestures/signs and will be of benefit to myself and Rhys and others. I have enjoyed this course very much. It was great to do the card game using Makaton with the service user. I now can use Makaton with the service user which has made conversation more fun. Also the service user and myself like his new activity picture book. Rhys has fun when staff are doing Makaton with him. He tries his best to help staff. Communication has improved with Rhys since attending both training sessions has developed basic Makaton with staff. From my own perspective, the questionnaires were a useful way of gaining insight into staff opinions of both Rhyss and their

4. ACT (what next?)

REFLECTIONS DO I USE MEANS, REASONS AND OPPORTUNITIES TO INFORM ASSESSMENT AND INTERVENTION? DO I HAVE THE RESOURCES TO OFFER INTERVENTION IN A CLIENTS FIRST LANGUAGE? DO I MONITOR CHANGE THROUGH PLAN, DO, STUDY, ACT CYCLES?
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In November 2010, 12 months from when I received the referral, a review was held with Rhyss parents, staff within the home and his social worker, with a written report from the staff at Rhyss workplace. The support staff stated that they continue to use gestures

SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2011