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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.

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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.

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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 …….

 

Talking Mats received funding from The Health and Social Care Alliance Scotland to look at how using the Digital Talking Mats can help people with long term conditions, including dementia,  to manage their health and well-being and to recognise their own strengths and abilities. We also hoped that participants would be able to have more control over their lives and have improved communication with families and professionals.

11 people living with dementia and their partners were involved in the project. Each participant had a tablet device and was given a personal digital Talking Mats licence which gave them access to 13 topics in the Talking Mats Health and Well-being resource. We visited each participant at home, taught them how to use it and asked them to complete at least 1 digital Talking Mat per week for 6 weeks on any topic they wished. The design of the digital Talking Mat allowed them to email their mats directly to us. We visited each participant a second time to discuss how easy it was to use the digital Talking Mats and their views on their completed mats. We asked those who wished to, to continue sending us completed mats beyond the initial 6 weeks and we visited them again in 6 months to discuss how they were managing.

In total we received 94 digital mats across all 13 topics from the participants living with dementia who reported that the use of the Digital Talking Mats during this project gave them a better understanding of their own individual health and social care needs.

A woman with dementia said ‘It (Health mat ) made me realise things are not so bad and made me think I will continue with my exercise classes, carry on walking, socialising and eating well’

dementia health mat

As well as helping participants self-manage their lives, an unexpected outcome of this project was that many people found that using the Digital Talking Mats helped them see the positive things in their life and not just the negative. It also highlighted that despite having a deteriorating illness, things were not getting worse.

‘This mat (Environment) showed me how happy I am in my own home and my neighbourhood’
environment

The following are some of the comments we received throughout the project.
• It helps me sort out my thoughts – very useful
• I get so much out of the process
• I come up with insights which might help me in the future
• I can now talk to (my wife) in a way I couldn’t before
• I’m more relaxed now
• I come up with niggly health things that my partner didn’t know
‘It made me realise things are not so bad’.

If you know of anyone living with dementia would like to obtain the Digital Talking Mats please fill in the attached Personal Digital Licence 161117 DTM personal licence form with explanation and send it to us at info@talkingmats.com

Click here for the full report of the project which also included people with stroke and learning disability

This research will explore older father carers perspectives  of caring for a son or daughter with learning disabilities. The aim of this project is to learn more about the experience of fathers who have a son or daughter with learning disabilities and how we can provide better supports and services for them in the future.

I am particularly interested in talking to fathers as mothers tend to be the focus when discussing the impact of caring on families who have a son or daughter with learning disabilities. While it is vital that we find out how to better support mothers, fathers’ role within the family and their experiences of caring are also very important. Despite this, fathers’ voices are rarely included in discussions about how service provision could be improved to meet these families’ needs.

The project focusses on older fathers (aged 60+) as I want to better understand the experiences of fathers who care for their son or daughter with learning disabilities over time. Fathers who are aged 60 and over will be able to talk about their experiences of caring at different times in their lives and how these experiences changed over time.

Fathers who participate in this project will attend an interview which lasts around one hour. I will meet fathers in their homes or at the University of Glasgow, depending on which option is more convenient for them. The interview involves discussing father’s experience of caring for their son or daughter with learning disabilities. We will discuss topics such as caring during their child’s early years, as they grew up, and more recently. We will talk about how the father’s relationship with their child and their caregiving role has changed over time, and how caring has impacted them.

 

If you think that you, or someone you know, would be interested in taking part in this project then please contact me at k.dunn.1@research.gla.ac.uk to find out more.

Self-management for people with long term conditions (LTC) is now a key government strategy to encourage people to take responsibility for their own health, behaviour and well-being. Talking Mats received funding from The Health and Social Care Alliance Scotland to look how using the Digital Talking Mats (DTM) can help people with LTCs to manage their health and well-being and to recognise their own strengths and abilities.

The overall aim of our project was to empower people with different long term conditions, to manage their own health and well-being. Through using Digital Talking Mats (DTM) we hoped that participants would be able to have more control over their lives and have improved communication with families and professionals.

There were a total of 28 participants in this project living with one of three different long term health conditions – stroke, dementia and learning disability. Each participant had access to a tablet device and was given a personal DTM licence which gave them access to 13 topics in the Talking Mats Health and Well-being resource. We visited each participant at home and taught them how to use it and asked them to complete and send us at least 1 digital mat per week for 6 weeks on any topic they wished. The design of the digital Talking Mat allowed them to email their mats directly to the researchers. We visited each participant a second time to discuss on how easy it was to use the digital Talking Mats and their views on their completed mats. We asked those who wished to, to continue sending us completed mats beyond the initial 6 weeks. We visited them again in 6 months to discuss how they were managing.
15 participants completed all 6 mats and 12 participants continued to complete mats over the length of the project. Participants completed 235 digital mats across all 13 topics

There were 3 particularly significant findings

1. At 18 months the participants living with dementia actually felt their well-being had improved, despite dementia being a progressive illness.
2. For the participants living with stroke the results were even more striking as 95% felt things were going well at the end of the project in comparison with 47% at the beginning.
3. At the end of the project the percentage of people with learning disability who felt things were not going well had reduced from 19% to 10%. Furthermore the percentage of people indicating that they were not sure about their views had increased from 27% to 42%. There can be a tendency for people with learning disability when using Talking Mats, to express their views at either end of the mat and to rarely use the mid- point. However being able to use the unsure mid- point is noteworthy as it indicates that the participants in the project realised that they could express their views not only as black or white but could indicate that they were unsure. This awareness opens up the potential for people to express views more thoughtfully with opportunities for further exploration.

Here are three examples of how using the DTM supported people to self-manage situations in their lives. Click on image to enlarge.

DTM stories

As well as helping participants self-manage their long term conditions, an unexpected outcome of this project is that many people found that using the DTM helped them see the positive things in their life and not just the negative. It also highlighted that despite having a long term condition and, for many also a deteriorating one, that things were not getting worse.

Click here for full report including 6,12 and 18 month reports to the funders  20180717 Alliance full report

Click here for the summary report 20180717 Alliance Final Short Report

Click here for a video link of 2 participants

Talking Mats in Germany is being extended by one of our trainers Professor Norina Lauer.  Here she describes two of her current interesting  projects and we look forward to reading her findings.

 

The German version of the Talking Mats app will now be tested in two more projects in the west of Germany. As the communication symbols were developed for English-speaking clients six German SLT students of the Hogeschool van Arnhem en Nijmegen (han) in the Netherlands want to find out if the words and symbols fit to German clients and their cultural background. Because of cultural differences between Scotland and Germany it is necessary not only to adapt the language but also check the icons.

One of the projects will be conducted with children between the ages of 8 and 10 years. The children will be asked to classify the symbols from their age-group. The question will be whether the symbols and words are relevant for the situation of German children. If not, they will be asked for possible alternatives.

The other project focuses on adults. One group of people with aphasia and one group of healthy persons will be tested. Every tested person scores the 57 icons concerning their correspondence with the words written down below by using a scale from 0 to 3. In addition, possible graphic alternatives will be enquired and collected. The two groups of adults will be used to determine if there is a significant difference between the obtained results from each group.

 

Awards
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