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Decisions, decisions. Few people can make a snap decision without weighing up options. This blog describes how the authors looked further into this as part of the Talking Mats process and discovered it is actually a crucial part of thinking and communicating. A good old Scots word, ‘Swither’ sums it up perfectly. Thank you to Joan Murphy, Norman Alm and Sally Boa members of the Talking Mats Research Network for this fascinating blog.

The Talking Mats Research Network currently includes 47 people from 11 different countries and meets regularly on Zoom. One of its subgroups is looking at how Conversation Analysis can help us to understand how and why Talking Mats works.

The project:

Comparison of the interactions of a man with severe expressive aphasia having two conversations on the same topic – one without Talking Mats and one with Talking Mats. The topic in both cases was how he was managing getting around.

What we found:

  • Without Talking Mats: there were more vocalisations in the conversation, but they were less intelligible and there was more confusion between the thinker and the listener.
  • With Talking Mats: there were more silences but this was an obvious part of the thinker’s response and by examining how he handled and placed the cards we got a clearer sense of his thinking and intellect.

Further analysis:

  • We employed Conversation Analysis techniques to look the session where Talking Mats was used.
  • A significant feature which emerged was that, with Talking Mats, the thinker often hesitated while thinking where to place the card, moving the card back and forth before finally settling in one position.
  • To explain this, we borrowed the Scottish word ‘swither’.  The dictionary definition of swither is ‘to be uncertain as to which course of action to choose’.

Our thoughts / conclusions:

Following discussion, we now feel that swithering, when we move our words or thoughts about in our brain to help us make up our mind, is an important positive feature of conversation. However, a person with a communication disability may find it hard to give a nuanced response and/or we often expect people with a communication difficulty to give a clear ‘yes’ or ‘no’ response. It can be seen as a failing if they appear uncertain, whereas swithering should be regarded as a positive and crucial aspect of how we think and communicate.

One of the many reasons why Talking Mats is successful is that it allows people to ‘swither’ by giving them permission to be unsure and gives them access to a more modulated response.

If you are interested in carrying out reseach in Talking Mats or using Talking Mats as part of your research you can read more here or contact us on info@talkingmats.com

On Wednesday November 10th we held a colloquium with the University of Edinburgh and NHS fife to report on the findings of the research that was funded with the Burdett foundation . The easy-read version of this report can be found here.

48 people attended the online event on Wednesday and engaged in some very thoughtful discussion and reflection on communication in forensic settings. There was much to think about including whether ethos and values align with self-determination , how to get communication taken seriously by staff who are often under huge pressure. Consideration of  where power lies in an organisation and an acknowledgment that  in order to share power staff themselves need to feel they have power.

The recognition that in the promotion of shared decision making, you increase the risk of people taking what others may see as unwise decisions. The need to support the capacity of people to be involved in decision making early on and in the smaller decisions of life and not leaving including them to a crisis.

The importance of further research in his area and that small clinically driven research projects have an important role to play in addition to ones funded by bigger grants. There is much to digest and we are hoping to keep the conversation going.

If you would like to see for yourself the research presented and the topics discussed at the colloquium you can watch the recording of the Zoom session here.

If you want to attend foundation Talking Mats training please find out more here. if you have completed your foundation training please consider attending the Keeping Safe advanced online module which includes the Keeping Safe resource . If you have the Keeping Safe resource please download the new Being Included bolt on to use with it.

By Nyaka Mwanza

Multiple sclerosis (MS) can result in a variety of communication difficulties. While broaching uncomfortable topics, such as multiple sclerosis life expectancy, can pose its own challenges, MS can also physically disrupt some people’s ability to communicate as effectively as they once did.

That’s because MS is an immune-mediated condition that damages and destroys neurons in the central nervous system (CNS). Known as demyelination, this destruction of nerve cells causes lesions in the spinal cord, optic nerves, and brain. MS lesions in certain areas of the CNS can sometimes result in difficulties with speech and comprehension. However, there are ways of overcoming these difficulties so that a person may communicate better.

How MS Disrupts Information Exchange

Communication issues in people with MS usually arise due to damage in areas of the CNS that are responsible for cognitive and motor function.

Cognitive Impairment

Cognition refers to our ability to think, read, learn, remember, reason, and concentrate. Cognitive processes also comprise language, planning ahead, imagination, and perception.

Approximately 70 percent of people with MS experience impairments in these cognitive functions. Cognitive difficulties such as slower processing speeds and worsened memory can impede a person’s ability to process spoken or written language. Cognitive impairment in a person with MS may also look like difficulty finding the right words for things when speaking, difficulties spelling words correctly, or switching words incorrectly when speaking.

Language and Speech Difficulties

Speech and language involve several cognitive functions, but speech also involves intact motor function, especially the coordination of the muscles in the lips, tongue, vocal cords, and diaphragm. However, MS can disrupt the brain’s ability to communicate properly with various muscles in the body, sometimes interfering with the ability to produce appropriate speech.

Dysphonia is a voice disorder due to weakened diaphragm functioning. The diaphragm helps with breathing and volume control. Dysphonia can result in very quiet or loud speech. A person with dysphonia may also find that they run out of air while talking. Dysphonia can also cause a raspy voice.

Dysarthria is a motor speech disorder commonly caused by the weakening of muscles used for speech, swallowing, and breathing. Between 40 and 50 percent of people with MS experience passing or permanent dysarthrias, which may result in slurring, monotone, and disruptions to speech patterns with abnormally long pauses between syllables or words. Issues like these can make holding a conversation difficult or uncomfortable.

Bridging the Communication Gap

A speech or language pathologist is a specialized healthcare provider who can evaluate and help treat voice and speech disorders. Depending on the severity of a person’s MS, some speech therapy will focus on compensating for dysfunctions in cognition and speech and enabling people with MS to find alternative means of communication. Other therapy for more mild speech difficulties may focus on developing strategies to control breathing, strengthen the vocal cords, or even simplify speech to make it easier to get through. People with MS may find it’s easier to hold a conversation when they’re not competing with other noises or distractions.  Tools that aid with cognitive dysfunction, such as Talking Mats, can help loved ones concentrate on common topics to help make discussion easier. Here is an example of how Talking Mats helped some with multiple sclerosis to set their goals https://www.talkingmats.com/getting-root-problem/

 

References

  1. MS Prognosis: Multiple Sclerosis Life Expectancy
  2. https://my-ms.org/anatomy_nervous_system.htm
  3. https://my-ms.org/mb_cognitive.htm
  4. Speech and Swallowing
  5. Multiple Sclerosis and Communication Difficulties – East Sussex Healthcare NHS Trust

About the Author

Nyaka Mwanza is a freelance writer for MyHealthTeams. She completed a B.A. in Communications: Visual Media from American University and undertook post-baccalaureate studies in Health/Behavioural Communications and Marketing at Johns Hopkins University. Nyaka is a Zambian-born, E.U. citizen who was raised in sub-Saharan Africa and Jacksonville, N.C. However, she has called Washington, D.C., home for most of her life. For much of her career, Nyaka has worked with large global health non-profits focused on improving health outcomes for women and children. Nyaka believes words hold immense power, and her job is to meet the reader where they are, when they’re there.

Join the twitter chat exploring the recommendations of the Citizen’s Jury for people with intellectual disabilities and need for inclusive research practices   In 2018 the Scottish Learning Disabilities Observatory and Talking Mats were funded by the Wellcome Trust to set up a Citizens’ Jury for people with learning/intellectual disabilities. We wanted to develop and test an adapted method of deliberative democracy, and hopefully to demonstrate that people with learning/intellectual disabilities can consider complex questions relating to health research. We also wanted to show that with resources, planning and good quality facilitation this could lead to valuable insights into inclusive research.

After a period of knowledge and skills development with our citizens’ jury members we held the jury over 5 days at the end of 2019. In early 2020 the Jury published their consensus report containing 10 recommendations for health research. You can watch a video  the jury members made to communicate the recommendations here:  Research Voices Citizens’ Jury: Our recommendations Involving People with Learning Disabilities – YouTube We believe that this report provides crucial insights into how people with learning/intellectual disabilities want to have their voices heard when it comes to health research. The next stage for us and the jury members is to secure further funding to build on this work and take forward the jury’s recommendations.

Through the Research Voices project we wanted to share our learning and develop resources that could be shared with the research community. Our evaluation report provides a detailed review of the Research Voices project with comprehensive information about the jury process and outcomes. There is an easy read version available.

On Tuesday the 8th of June we will host a twitter chat about inclusive health research from 7pm – 8p.m . We hope to welcome researchers, self-advocates, third sector organisations, carers and others to contribute to this discussion.  If you have never joined a twitter chat before this is your opportunity. Here is how:

  • At 7p.m on the 8th June go to twitter search on the hashtag #researchvoices.
  • The first thing will be introductions – people can say who they are and where they come   When you respond in a twitter chat always use the hashtag of the chat, in this case, #researchvoices. Using the hashtag allows everyone to see the conversation.
  • Then we will post question 1 – when you respond to a question start with the question number e.g. Q1 but still remember to use the hashtag #researchvoices
  • Later on question 2 and question 3 will be posted. To respond put Q2 or Q3 and the hashtag #researchvoices
  • You can either respond directly to the questions or respond to the comments that other people have posed by saying what you liked or by asking them another question. Remember still use the hashtag #researchvoices in your response.
  • Sometimes people just want to observe the conversation. That’s fine too but remember you can join in the conversation at anytime
  • We look forward to seeing you on the 8th of June for this important twitter chat to share ideas and good practice

Questions….

Q1 How do the recommendations of the citizens Jury align with current research practice, what changes will you make to implement them, and what are the barriers to implementation?

Q2 What does successful inclusive practice look like to you – share your top tips for promoting inclusive research?

Q3 Inclusive research builds skills, expectations and connections with researchers with learning disabilities.  Does the research community have responsibility for maintaining this long term and if so how?

We are delighted that we now have around 20 members of our Talking Mats (TM) research group.  Members come from a variety of countries including the United Kingdom, Denmark, Cyprus, Germany, Sweden, Australia and JapanWe are a mix of academics and practitioners, with many combining both roles.  So far we have spent time getting to know one another via video sessions and thinking about how the group might work. 

We have decided our initial focus will be thinking about ways of analysing the data that is generated from conversations that are supported by TMs. This idea was suggested by Nikita Hayden.  Nikita is a PhD student at the University of Warwick exploring the outcomes of siblings of children and adults with learning (intellectual) and developmental disabilities. Part of her research has used TMs with children with severe learning disabilities and their siblings to further understand their sibling relationships.  

The types of data generated have been rich, vast and varied, leading to an overhaul of Nikita’s initial plan to analyse her TM data. This has raised questions about how TMs are interpreted and analysed in a research context, and what scope there is for our group to explore and synthesise the analysis potential of TMs. This is a question that the TM team is often asked and so having some information on the different options would be useful.  

TM discussions generate various types of data, including: 

  • The photograph of the mat (which symbols are placed under the various columns); 
  • The conversation generated during the discussion; 
  • The body language and facial expression of the ‘thinker’; 
  • The speed of placement of symbols; 
  • The symbols that are moved following feedback etc. 

We would like to review existing publications that have used TMs as research data and think about possible methods of analysis. This may include consideration of both within and between group research analysis techniques. It may also involve exploring the potential of both traditionally qualitative and quantitative analysis techniques, such as thematic or conversation analysis, or by drawing on data from the symbol placements to provide pre-post evaluation data.  

We hope to generate a list of guidelines about what you might need to take into account when considering how to analyse these data.  A challenge when analysing TMs data, is how to handle the variation in the types of data collected between participants. For example, some participants may place a large number of symbols, whereas other participants may have placed relatively few. This raises questions about how we deal with ‘missing data’. In small samples, how can we conduct a pre-post evaluation where some symbols are missing for some participants? If some participants use a five-point scale, and some use a two-point scale, what numerical analysis potential is there, if any? How can we appropriately derive qualitative themes from across our sample if some of our participants were minimally verbal? What sorts of non-verbal cues have been analysed in research using TMs?

Please do share any ideas or questions you have with Jill Bradshaw, our Talking Mats Research Associate – J.Bradshaw@kent.ac.uk  

 

Many thanks to Professor Anna Dunér, Dr Angela Bångsbo and Associate Professor Tina Olsson for this guest blog describing their research project where Talking Mats will be used to enable service users living with dementia to be involved in decisions about their home care services. The project is based on a collaboration between Department of Social Work at the University of Gothenburg, Borås University College and the municipality of Borås, aiming to develop and evaluate the use of Talking Mats. 

Anna Duer  Professor Anna Dunér

Angela Bangsbo   Dr Angela Bångsbo

Tina Olsson  Associate Prof. Tina Olsson

 

In Sweden, as in many other developed countries, ideas of consumer choice and personalisation of services have been implemented in social care with the intention of achieving better choice and control as well as increased quality of the services provided for the individual. However, persons living with dementia are at risk of being excluded from the opportunities provided to other groups of service users. Thus, it is important to develop both needs-assessment procedures, and improve the performance of home care services, to enable older people living with dementia continuous choice and control in their everyday living.

We hope that Talking Mats will improve the communication between service users, care managers and staff in eldercare and lead to increased influence of service users over the decisions and planning of their home care services.

During 2020 we have funding for a planning study where we can develop and test the Talking Mats decision aid, identify, translate and test outcome measurements, and refine and test the procedures for a comparative intervention project. In 2021 we hope to attain funding for a three year study.

We have already received valuable advice and information about Talking Mats research from Dr Joan Murphy and hope to keep in contact with her and the Talking Mats team throughout our project.

If you are interested in Talking Mats Research, check out our recent blog with details of how you can get involved with our Virtual Network: 

https://www.talkingmats.com/virtual-talking-mats-research-network-launched/

Thanks to all the people who have expressed an interest in the Talking Mats research group . We are excited to see the range of research going on and how people are using Talking Mats as a research tool in a variety of settings e.g. universities, NHS, not for profit organisations, youth justice – and with such a wide range of client groups e.g. dementia , alternative and augmentative communication , children and young people, people with learning disabilities, and palliative care.

This is a virtual network and we are still exploring ways in which this could work, but it could involve an email network, virtual seminars and/or twitter chats.

If you are interested in being included, and have completed our Talking Mats Foundation Training course, we would love to hear from you.

JB picture

The network will be coordinated by Dr Joan Murphy, Founding Director of Talking Mats, and Dr Jill Bradshaw (Tizard Centre, University of Kent) who was appointed as our Honorary Associate in November 2019 https://www.talkingmats.com/honorary-research-associate/

If interested please complete and send the following form to info@talkingmats.com:

Application-to-join-TM-research-network

 

 

The Talking Mats Board is delighted to appoint Dr Jill Bradshaw from the Tizard Centre, University of Kent, to the position of honorary research associate. This is our first appointment of this kind. Talking Mats is an evidence-based framework and research is important to us – but that research needs to be much more diverse, and involve a much wider range of people.

Jill’s role will be to give the Talking Mats team:

  • A sounding board for research ideas and proposals
  • Advice and support on publishing articles
  • Identify research gaps and advise on funding avenues

We are also very aware that a number of people are using Talking Mats as a research tool, and Jill will also help to develop a virtual research network to bring interested researchers together.  We are still exploring ways in which this could work, but it could involve an email network, virtual seminars and/or twitter chats. If you are interested in being included, and have completed our Talking Mats Foundation Training course, Jill would love to hear from you. Please email her on J.Bradshaw@kent.ac.uk – or email info@talkingmats.com and we will forward your interest to her.

Jill is really excited about this new post.  She says ‘We know that the voices of people who have communication challenges can be excluded from research. This is a great opportunity to work with others to think about how we can use Talking Mats creatively in research and to find ways of including views from a wider range of people’.

Lois Cameron

November 2019

 

Talking Mats is now used in many countries all over the world.  As part of our #TMis21 blog series, we wanted to share this great example of Talking Mats being used in Germany.

In March 2019 Prof. Dr. Norina Lauer (OTH Regensburg) and Elena Maxheimer held a lecture and a workshop about Talking Mats at the “aphasia days” in Wuerzburg, Germany.  Many thanks to Norina and Elena for sharing information about the “aphasia days” for this blog post.

The “aphasia days” are a large congress – unique in Europe – for people with aphasia, family members and speech and language therapists (SLT). Every year around 600 people from Germany, Austria, Switzerland and Hungary are coming to this event. There are talks, workshops and podium discussions held by participants with aphasia, family members or SLTs. In front of approx. 150 listeners Norina and Elena gave a lecture about Talking Mats and the results of Elena’s bachelor thesis, in which she worked with people with aphasia, who learned to use Talking Mats.

presentation_yellow

In a three-hour workshop at the “aphasia-days” Norina and Elena taught nine people with moderate to severe aphasia how to use Talking Mats. All persons brought their own tablets and logged into their own account. They where shown how to choose a topic and a top scale and practiced in teams of two. All of them conducted several sessions with different topics and switched partners a couple of times. They had a lot of fun talking about things that matter to them and learn more about their peers. At the end of the workshop they were able to use Talking Mats themselves and are going to use it with their relatives and friends at home. As the workshop was very well received by the participants, it is likely to be repeated at the next “aphasia days” 2020.

german app in action

If you would like to find out more information about Talking Mats in Germany, and the Digital Talking Mats app which is now available in German, check out https://www.talkingmats.com/talking-mats-in-germany/  and https://www.talkingmats.com/german-digital-talking-mats-with-people-with-aphasia/

 

Our Talking Mats is 21 Event is in Stirling on Thursday 15th August 2019.  Thanks to funding from NHS Forth Valley endowment committee the event is free but you do need to book your space https://www.eventbrite.co.uk/e/talking-mats-is-21-tickets-62362171935

21st save the date

You can come to the morning only, afternoon only or come for the whole day.

If you can’t come to our event watch out for out blogs and social media celebrating the reach of Talking Mats for 21 days before the 15th of August.  Please join in with your contributions using the hashtag #TMis21. For 21 days after our event we will be having a special Birthday offer! Watch this space, more to follow …….

 

Many thanks to Jenny Trott for our new guest blog about her interview with Talking Mats Director, Lois Cameron – Jenny’s video provides some great information about the Talking Mats approach and our original and digital resources:

A year ago I started my YouTube channel (www.youtube.com/jennytrott) as a way of supporting parents and carers with information and inspiration. As a parent of a disabled child myself I knew that one of the best ways to find out things is from other parents, and YouTube was just a different and new way to do that. To date I have published nearly 50 films about subjects ranging from Self Directed Support to Rebound therapy, and including interviews with parents, professionals and disabled people.

Quite early on I knew that I wanted to make a film about Talking Mats. I had used Talking Mats when I worked with people living with dementia, and I knew that my son’s school were using them too. I had seen the benefits of this innovative communication tool but I also knew that many parents and carers didn’t really understand it because they hadn’t been given the right information.

Lois was kind enough to agree to join me in front of the camera, so in April I visited Talking Mats in Stirling with my tripods, microphones and cameras. It can be a bit daunting interviewing someone I’ve not met before but Lois instantly put me at ease and had the great idea of demonstrating a Mat rather than just talking about it. It was so interesting, experiencing using a Mat first hand and it helped to show the viewers what Talking Mats is really about.

You can view the video here: https://youtu.be/Fmyt1fE-_U8

The feedback from the film has been great, both from professionals, parent carers and SLT students; lots of lightbulb moments; “ah, now I get it”!

learning_and_thinking

I am still making films but less frequently as I am now also setting up a social enterprise, Mecoco (www.mecoco.org) here in North Ayrshire.  We’ll be offering work experience and volunteering opportunities to disabled people to work alongside us making candles and melts. I am sure Talking Mats will be invaluable in our workshop!

If you’d like to find out more about accessing Talking Mats training take a look here- https://www.talkingmats.com/training/  – we offer a range of options including online, and bespoke training for organisations, as well as advanced courses and specialist seminars for those who have already accessed Talking Mats Foundation Training.

 

 

 

 

 

 

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