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Our thanks for this guest blog go to Meredith Smith, Paediatric Physiotherapist and Lecturer in Physiotherapy in the School of Allied Health Science and Practice at the University of Adelaide. In this blog, Meredith talks about the development of a Talking Mats resource to facilitate self-reporting in pain assessments for children and young people with cerebral palsy.

Our research team has been working on modifying pain assessment tools so they are more appropriate, relevant and accessible to children and young people with cerebral palsy (CP). People with CP have varying functional, communication and cognitive abilities, which makes existing assessment tools (often pen and paper questionnaires) difficult to use across the spectrum of ability. As a result, children and young people with CP often don’t have the opportunity to self-report how pain is impacting their function.

We are based in Australia and our team is made up of physiotherapists, an occupational therapist, a medical practitioner, researchers and people with lived experience of CP. One of the first things we did as part of this project was to ask people with lived experience of CP and clinicians what we could do to make two specific pain assessment tools more accessible and relevant to people with CP and different abilities. One of the clinicians (a speech pathologist), suggested we consider a Talking Mat alternative for each of the assessment tools. These two assessments focused on two concepts – 1) how pain interferes with function and 2) pain-related fear. We were keen to focus on these assessments as this would help us to not only open up a conversation about pain with children and young people with CP, but would also provide us with a way of identifying children who might benefit from particular pain interventions, and allow us to monitor the effectiveness of these interventions.

Prior to this suggestion I had heard of Talking Mats but never used it. Our research team underwent Talking Mats foundation training which was excellent, and we were all really impressed with the concept and its application in varying contexts. We had initially thought that we might need a Talking Mat to get feedback from children on the assessment tools, but we all agreed that converting the pain assessment itself into a Talking Mat would make the most sense for now.

Working with the Talking Mats team was a fantastic experience. We all really appreciated the expertise of the consultants in considering how we worded some of the assessment tool items. The symbols created were also excellent, and when we tested them with children and young people with CP they were simple and easy to understand.

Here is an example of a Talking Mat discussing pain interference with function. The lead in phrase is ‘how much does pain get in the way of……’. This Talking Mat was easily understood by most children with CP, even those with moderate cognitive impairment and complex communication needs.

A Talking Mat discussing pain interference with function

The second Talking Mat looked at pain related fear, with the lead in phrase ‘pain makes me……’. This was a more challenging and abstract concept, but was much easier to explore using the mat than on a standard pen and paper questionnaire. The Talking Mat versions can be interpreted as a 5-point response scale (the three response options and then two in-between sections), allowing us to still total an overall score for the assessment.

A Talking Mat looking at pain related fear

The feedback from children, young people and their families has been very positive. Families of children with cognitive impairment or complex communication needs have shared with us that previously it was assumed that their child could not self-report pain, and often they were asked to proxy-report on their behalf. Parents have told us how difficult it is to proxy-report on personal concepts such as pain-related fear, and that they couldn’t possibly know for certain how pain was making their child feel.

We are in the process of continuing to test the Talking Mats resource and look forward to making the it more widely available in the future.

Keep an eye on our website for more information about the Pain Assessment Resource as this project progresses.

If you are interested in completing Talking Mats Foundation Training, you can find out more here.

Talking about sensitive issues can be challenging at times. We are so excited to publish this guest blog from Julia Pollock, Highly Specialist Speech and Language Therapist (SLT) from the REACH team in Perth, Scotland, explaining how a newly developed Talking Mats resource helps to open up conversations with young people about sex.

REACH is a unique team, one of a kind in Scotland, that provides intensive support for care experienced  children and  young people on the edge of care in Perth & Kinross.  We are a multidisciplinary team bringing together professionals across health, education, social work and youth work. This allows us to provide prompt specialist care, while limiting the need for referrals to multiple agencies.

My colleague, Janie Scott, and I have worked for REACH since its inception, as Highly Specialist Speech and Language Therapists. Research shows that more than 60% of care experienced young people have some kind of speech, language and communication need (SLCN) and at REACH we work on the assumption that our young people may have an SLCN – until proven otherwise. This means that we routinely offer communication assessments and support to every single young person (and their parent/carers), in addition to keeping inclusive communication at the heart of everything we do. Adopting this approach ensures that none of our young people have to struggle with communication difficulties unsupported.

Working in a multidisciplinary team with a heavy social work contingent has been a very different experience for Janie and I. The team were open to our training and approaches and allowed us the freedom and autonomy to shape our own SLT service.

One of the first things we did at REACH was to introduce Talking Mats. We are both Talking Mats Licensed Trainers. All our REACH staff, as well as any other colleagues across the council and NHS who also work with our young people are Talking Mats trained.

Despite some initial scepticism around using pictures with teenagers, the resource has since proven to be incredibly useful and engaging for this particular client group. It has now become a staple resource that our staff will reach for regularly to facilitate conversations with our Young People and to help them express their views on complex issues.

Our young people can occasionally find themselves in conflict with the law and wrapped up in the complexities of the criminal justice system, as a result of their often disadvantaged backgrounds, and/or due to a range of ongoing challenges  such as developmental trauma, social emotional and mental health difficulties, and/or Speech, Language and Communication Needs (SLCN).  In addition to supporting REACH clients through their criminal justice journey, our team also specialise in harmful sexual behaviour assessments, for both internal and external clients.

The idea for a Talking Mats resource for harmful sexual behaviour initially came from one of our Senior Practitioner Social Workers, Amy MacKinnon, who suggested that Talking Mats might be a useful tool to support their harmful sexual behaviour assessments (AIM3).  The assessment, which involves interviewing the young person about incredibly sensitive and personal issues, can be quite confronting for young people. We discussed the possibility of having visual resources which would not only cater to the SLCN of our clients, but that would also make the assessment feel less intimidating for the young people, encouraging more open and honest responses.

 We often start by assessing  a young person’s existing level of sexual knowledge and understanding, as how can young people possibly share their version of events if they do not understand the basic concepts of which they were being accused of?

This includes exploring their understanding of the language around sexual physiology and anatomy, in addition to the social and legal considerations of sexual behaviour.  The introduction of this resource allowed us to explore existing knowledge much more effectively than we had previously, with a more logical progression of concepts ranging from the very concrete language for body parts, through to more abstract ideas such as consent.  More careful consideration of the young person’s language level really helps to ensure that the Young Person’s responses are accurate. We recognised that our existing pictures/resources needed development and so I approached Talking Mats to ask if they would consider working with us to create an official Talking Mats resource using their own artwork and branding. I know from experience that their artist, Adam, always does a fantastic job creating simple images that are so easily understood while also being sensitive and inclusive.

We developed a small working group with a handful of REACH and Talking Mats staff  who have focused on developing  a new healthy relationships resource to open up these tricky conversations.  We have now completed the pilot stage,  and have a fantastic resource. Talking Mats did not disappoint and as expected, they worked wonders with the images!

One interesting development along the way was the group’s reflection that the resource had felt quite negative and that perhaps we should keep a more neutral stance when developing the concepts – leaving room for much more general (or even positive) discussions around sexual development too. This allowed us to expand the resource to include concepts relating to puberty and gender identity. We felt that this would make the resource more far-reaching and impactful, while still retaining the option to use the more niche resources for addressing harmful sexual behaviour, when required. 

The feedback we have received has been overwhelmingly positive, with comments such as ‘It’s amazing’ and ‘We’ve been sitting waiting for a resource like this.’ Those trialling the resource for us unanimously felt that the resource helped them to discuss the topic with their clients, helping to ‘open up’ discussions that would otherwise be more challenging to initiate. We have also received a lot of positive feedback on the clarity of the concepts and images; the consensus being that the visuals are easy to understand and unambiguous. This is fantastic feedback given the complex and abstract concepts we were tackling with this resource!

An example of a Talking Mat using the newly developed symbols

We are looking forward to sharing more information about the project and resource in an Advanced Webinar for practitioners who have already completed Talking Mats Foundation Training, in September 2024.  

Look out for the second part of Julia’s blog next week, to read one of the powerful examples of the positive impact this resource has already had.

Inspired to think about Talking Mats Foundation Training? Find out about all the options we have available here.

Thank you to Joan Murphy and Jill Bradshaw for this blog that demonstrates the criteria required for a Talking Mat to be a Talking Mat.

Talking Mats is now an established tool to help people express their views but the way in which is it used can vary and, at times, practitioners may adopt a ‘Talking Mats approach’ which is not truly a Talking Mat.  

One of the activities of the Talking Mats Research Network was to establish the criteria which define a ‘true’ Talking Mat and we hope this blog will help clarify that. 

The main components of a Talking Mat are  

  • A space to display the symbols – physical or digital 
  • A Top Scale 
  • A Topic for discussion 
  • Options which relate to the Topic.  

In addition, the Research Network identified the following 3 main criteria to verify a Talking Mat: 

  1. Are open questions used within the Talking Mat? For example, ‘How do you feel about x?’ rather than ‘Do you like x ?’ Sorting options into categories is not a true Talking Mat.  
  1. Is the top-scale consistent with Talking Mats principles? The top scale needs to be such that thinkers are able to use the top-scale for reflection when asked an open question relating to a particular option. 

3. Is the purpose of the Talking Mat to gain views on a particular topic or issue? The Talking Mat needs to be used in a way that provides an opportunity for the thinker to give their views about the topic. Of course, people with more complex communication challenges may not provide any additional information about their views, other than placing the symbol. However, if the placement of the option is used as a potential opportunity for a discussion, then this can be seen as a Talking Mat. 

Further explanation can be found here

Training in Talking Mats covers the criteria and how to achieve it in more detail and is always advised to use this innovative tool to it’s full potential.

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

 

 

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