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Thanks to Agnes Turnpenny for her  guest blog on her research on  views of people moving form institutional care in Hungary.

There are approximately 15 thousand adults and children with learning disabilities living in large institutions in Hungary. The average size of these facilities is over 100 places, and living conditions as well as the quality of care are often very poor. The Hungarian Government adopted a strategy in 2010 to close and replace these institutions with smaller scale housing in the community. Between 2012 and 2016 six institutions closed and more than 600 people moved to new accommodation. The Mental Health Initiative of the Open Society Institute and the Hungarian Civil Liberties Union commissioned a study to analyse the experiences of the deinstitutionalisation process and as part of this research we carried out some interviews to explore the views of people moving out of the institutions.

The participants – five men and four women – came from one institution in the North East of Hungary, they all had mild learning disability and some had additional mental health issues. Originally the study intended to explore the experience of moving out but due to delays in the project this was not possible. Instead, we decided to examine the expectations of moving from an institution to a smaller home that allows more independence and personalised support. Although only one of the participants had communication difficulties – thus conventional interview methods could have been utilised – I decided to use Talking Mats in order to help participants to contrast their current situation with expectations about the future.

I selected the ‘Where you live’ topic from the Social Care package with some additional images from the ‘Leisure and Environment’ and ‘Relationship’ topics. (The English labels were covered over with a Hungarian translation as most of the participants could read). The question I asked was “How do you feel about these aspects in the institution?” and “What do you think they will be like in the new home?”. (I forgot to take a mat with us, therefore we had to lay out cards on the table.)

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It emerged – unsurprisingly – from the interviews that most participants anticipated the improvement of their living conditions from the move, especially better facilities (mainly bathroom and kitchen). Some also expected other positive changes, particularly less conflict with other residents, less noise and better safety –commenting on the prevalence of theft in the institution. There were also many uncertainties; people said they were unsure about how they would get on with their new housemates, how the new support arrangements with staff would work, whether the neighbours will be welcoming etc. The photos illustrate some these issues.i1

Overall, Talking Mats proved to be a very useful tool in interviewing participants, who really engaged with the method. The images and the completed mats encouraged further comments and explanations on issues that participants considered important with minimum prompting. The drawings were easily recognised and appropriate in the Hungarian context without any adaptations other than the labels. Finally, I felt that the use of Talking Mats in this particular situation helped to overcome some of the power imbalance between the researcher and the participants by giving them more control when handing over the images.

We are really grateful to Agnes Turnpenny from The Tizard Centre University of Kent for sharing her experience . We really value our European work and European connections.

One of the issues which has emerged from  previous Talking Mats and dementia projects is that many people with dementia experience difficulties with mealtimes and that it can affect people at any stage of dementia.
Mealtimes involve two of our most fundamental human needs, the basic physiological requirements for food and drink and interpersonal involvement. Mealtimes are particularly important for people with dementia as they may develop difficulties both with eating as a source of nourishment and with the social aspects of mealtimes.

In 2015 Joan Murphy and James McKillop carried out a project, funded by the Miss EC Hendry Charitable Trust, to gather information from the first-hand experience of people with dementia about their views about mealtimes. We ran three focus groups and used the Talking Mats Eating and Drinking Resource to allow participants to reflect, express and share their views.

Findings: 
The people who took part in this study felt that there were significant changes in their eating and drinking since their diagnosis of dementia. For some, their experience of mealtimes had changed and several said that they now skip breakfast and sometimes lunch. For some this seemed to be related to forgetting to eat and drink, for others it related to changes in taste whereas for others these meals seemed to be simply less important. Forgetting to eat was particularly noted by the participants with dementia and confirmed by their spouses.
The social aspect of eating and drinking also changed for many of the participants and, given the importance of social engagement for quality of life it is important to be aware of the effects of changes in eating and drinking on mealtime dynamics. For some it may be that they are now less interested in the social aspect of eating with others at home. Others found it hard to eat out because of distractions and lack of familiarity while some felt embarrassed about eating out in front of strangers. Others still really enjoyed going out for meals but added that they preferred to go somewhere well-known to them. The shared mealtime may be a particularly crucial opportunity for social engagement as it plays a central role in our daily lives. Social relationships are central for not only enhancing quality of life, but also for preventing ill health and decreasing mortality (Maher, 2013).
Almost all the participants talked about how their taste had changed both for food and drink which in turn affected their appetite. Some families had overcome the problem of lack of taste by going for more strongly flavoured food. When asked specifically about drinking, thirst was noted as a significant change since diagnosis
Their feelings about the texture of food did not appear to have changed significantly and was simply a matter of preference.

Three additional health issues which the participants felt were connected with eating and drinking were poorer energy levels than before their diagnosis, reduction in ability to concentrate and changes in sleep patterns.

For a copy of the full report please click here Dementia and Mealtimes – final report 2015

The transition from children’s to adult health services for young people with exceptional needs and their families is complex, multifaceted and fraught with concerns and fears. CEN Scotland commissioned Talking Mats to carry out a study to collect the views of 10 young people and their families who are experiencing this transition in Scotland.

The families in the project have given us clear views about their problems and fears and also some thoughtful suggestions for what could be made better. It is often in making small changes that significant improvement can occur. These suggestions include:

  • Courses for parents on transition
  • More specialist nurses e.g. transition nurses, acute liaison learning disability nurses
  • Start preparing early – at least 2 years
  • Transition wards for young people
  • Training for doctors and nurses about complex needs
  • More respite, not less
  • Emotional support for parents
  • Longer appointment times
  • A hotline to GPs

This study captures the complexity and variation of transition health services for young people with complex health needs from the perspective of both the young person and their parents. Despite the problems and fears we also saw evidence of good practice and suggestions, such as those above, which give hope for the way ahead.

To read the full report, including a moving case study, and direct comments from families, please click here CEN Transition Report

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Thanks to Lauren Pettit for this thought provoking blog about using Talking Mats in a rehabilitation setting in South Africa to compare goals of adults with aphasia, their Speech and Language Therapists and their significant others.
I am a Speech-Language Therapist in Johannesburg, South Africa and I work in neuro rehabilitation for people who have had a stroke or head injury. Over the past few years, I have been inspired to learn more about implementing communication modes to assist people to participate effectively in various communication interactions.
Talking Mats™ is such a wonderful tool that enables people to communicate so many things, from their needs and desires, to engaging in higher level conversations. I have seen the benefits of this tool used in a rehabilitative setting. I recently completed my dissertation with the Centre for Augmentative and Alternative Communication (CAAC) at the University of Pretoria, in South Africa.
The study included adults with aphasia who were still attending therapy at least 6 months after their stroke and were working on activities and tasks in various therapies, for example: Occupational Therapy, Physiotherapy, Speech-Language Therapy, therapies. I wanted to understand what was important for them to work on in rehabilitation to improve in various areas of life. Some of the adults with aphasia had very little or no speech, others had difficulty expressing themselves and finding the appropriate words to use in a phrase or sentence. Talking Mats™ was therefore used to assist them to rate important life areas. The life areas (activities and participation domains) were identified by the International Classification of Functioning, Health and Disability (ICF). This classification system was created by the World Health Organisation (WHO) and may guide therapy assessment and management. The areas were depicted as symbols with a supplemented written word on each card. These nine cards were: Domestic Life, Relationships, Work and Education, Leisure or Spare time, Self Care, Learning and Thinking, Coping, Communication, and Mobility. The adults with aphasia were asked what was important to them to work on in rehabilitation. The adult with aphasia could place the card under Yes, Maybe or No on the velcro mat and provide a comment if he/she wished or was able to. The Speech-Language Therapists who worked with the adults with aphasia and their significant others (a family member/friend or carer, who knew the person well) were also included in the study. They were asked to identify which areas they thought were important for the adult with aphasia to still work on in therapy.

(Click on graphs to see clearly)

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It was very interesting to see varied opinions in the results. Six of the areas received similar ratings from all the participants and Communication was highlighted as an important area to work on by all. There were statistical differences found for the following domains: Work and Education, Leisure or spare time and Self Care. The adults with aphasia wanted to work on Leisure or Spare time and Self Care, however, Work and Education was not important to them to work on in rehabilitation, whereas the Speech-Language Therapists rated Work and Education as important for the adults with aphasia to work on. Significant others did not rate these domains as important.
This study gave a glimpse into how some rehabilitation teams are currently communicating and working together and that very often, the people who have difficulties expressing themselves are perhaps not always given the time and space to understand the therapy plan and identify and communicate their individual therapy needs. This needs to be explored further. Talking Mats™ provided a structure and gave the adults with aphasia a ‘voice’ and the opportunity to engage in this complex communicative interaction. I am in the process of sharing the results from the study with the participants. I have encouraged them to sit together in their teams and identify areas that could currently be focussed on in their therapy. Many participants were eager to discuss the results after the interviews were conducted and were interested in the concept of prioritising their rehabilitation needs. I hope they see their participation in this study as the opportunity to further engage in their rehabilitation needs and that it gives them the confidence to participate more fully in many other areas of their lives that they identified as important.
I would so appreciate your thoughts and input. Please respond to Lauren lolpettit@gmail.com

During a research project funded by the Joseph Rowntree Foundation in 2007, Joan Murphy and Cindy Gray developed the Dementia Communication Difficulties Scale (DCDS) to help identify the communication difficulties that a person with dementia might be having and therefore help carers and staff to understand these difficulties and therefore support the person with dementia. The scale comprises 13 statements that are based on existing definitions of the communication problems commonly experienced by people as dementia progresses (Kempler, 1995; Health Education Board for Scotland, 1996):

In early stage dementia, the person

  • may have difficulty coming up with words
  • may tend to digress and repeat themselves.

In moderate stage dementia, the person

  • may find it hard to understand what is said to them, particularly when being given complex information
  • may have difficulty maintaining a conversation topic without losing track
  • may use semantically empty words (e.g. thing, stuff) in place of content words
  • may be difficult to understand.

In late stage dementia, the person

  • may make little sense
  • may not be able to understand what is said to them, even when simple language is used
  • may often repeat what other people have said to them
  • may communicate mainly in non-verbal ways

The DCDS requires a third party who knows the person with dementia well (a paid carer or family member) to assess various aspects of their communication on a 5-option scale. People are asked to circle the option that most closely describes the person in question.

Each DCDS option is assigned a score: for example ‘Never’ = 0, ‘Sometimes’ = 1, ‘Often’ = 2, ‘Always’ or ‘Says too little for me to judge’ = 3. A person’s DCDS rating is obtained by totalling their scores for all 13 statements. DCDS ratings can therefore range from 0-39, with a higher rating indicating a greater degree of communication difficulty.
The following stages of dementia group definitions were produced:
• DCDS ratings between 0 and 10.5 = early stage
• DCDS ratings between 11 and 19.5 = moderate stage
• DCDS rating between 20 and 39= late stage.

The Dementia Communication Difficulties Scale is brief, straightforward and quick to complete, and may therefore provide a highly useful tool for the care staff, clinicians and practitioners involved in assessing the needs of people with dementia.

If you would like a copy of the scale please click here: Dementia Communication Difficulties Scale

References:

Kempler, D. (1995). Language Changes in Dementia of the Alzheimer Type. In R. Lubinski (Ed.), Dementia and Communication, San Diego: Singular Publishing Group.

Health Education Board for Scotland (1996). Coping with Dementia: A Handbook for Carers. HEBS.

The final part of my keynote talk at the AAC Conference in Helsinki last month focused on what we mean by communication effectiveness.
It is important to be able to determine the effectiveness / success of an interaction between two people, whether they are politicians, parent and child, husband and wife….. people using AAC systems or people using their own speech.
When I carried out a literature search of peer reviewed journals for my PhD in 2009 I could find no clear definition of communication effectiveness. Some people thought that effectiveness was synonymous with ‘word intelligibility’ or ‘correct syntax’. Others defined effectiveness in terms of the number of words produced on an AAC device. One publication even suggested that effectiveness was demonstrated by someone taking responsibility for charging their AAC device!
The main focus of all the papers I found, which mentioned communication effectiveness, was on needs and wants and only 3 papers cited social closeness as important (click here to read previous blog).
However, some publications did give useful pointers. Light (1988) emphasised that effective communication depends on 2 way interaction and that the partner is a major factor in the success or failure of communicative interactions. Lund (2006) described adequacy, relevance, promptness and communication sharing as key indicators. Ho et al (2005) highlighted satisfaction – partners’ feeling of how well they communicated during the conversation. Locke (1998) stressed that determining the success of any communication is a subjective undertaking as ‘Communication is not a mathematical formula of phonemes, morphemes and syntax, but rather includes casual conversation such as gossip’.

The Talking Mats team has tried to capture what we believe are the essential factors in determining communication effectiveness. We have produced a simple tool – the Effectiveness Framework of Functional Communication (EFFC) which can be used to chart key factors in an interaction on a 5 point scale and give an overall indication of whether the conversation is effective or not.

We have used the EFFC in several of our research projects and show participants how to use it during our training workshops. In Finland I tried it out with the audience of 200 AAC professionals using 3 video examples of different AAC conversations. The resulting scores were amazingly in agreement suggesting that this is a reliable tool.

For a free download please click here  EFFC 2014

We would welcome any comments or questions.

For those of us who work or live with people with communication difficulties it’s important that we consider the purposes of human communication. As long ago as 1988 Janice Light suggested that there were 4 main purposes and we believe this is still a good model to bear in mind.
(Light, J. (1988) “Interaction involving individuals using augmentative and alternative communication systems: state of the art and future directions”, AAC, 4, 2, 66-82)

She described these purposes as:
1. Expression of needs and want – to regulate the behaviour of another person to get something
2. Information transfer – to convey information from person A to person B
3. Social closeness – to establish and maintain relationships with others
4. Social etiquette – to conform to the social conventions of politeness

We believe that there is a tendency to concentrate too much on 1 and 2 and not enough on 3 and 4. If we dwell on needs and wants, which is very often the focus of communication aids, there is a danger that the person with the communication difficulty will find it hard to establish and/or maintain relationships.

In 1998 John Locke wrote that ‘small talk’ is crucial for the construction and enjoyment of relationships with others and that by revealing thoughts we elicit reactions from others. This is what we regard as social closeness or engagement. ‘Small talk’ or ‘social closeness’ may sound irrelevant but it is one of the most important purposes of human communication.
(Locke, J. L. (1998) “Where did all the gossip go? Casual conversation in the Information Age”, American Speech Language Hearing Association, 40, 3, 26-31)

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Talking Mats, which uses attractive and motivating communication symbols, is one way to help people to express their thoughts and achieve ‘social closeness’, whether they are a 4 year old boy with Downs Syndrome or a 95 year old woman with dementia.
Talking Mats is one of the few resources that is versatile enough to be used as a stroke communication resource, for consulting children and young people or to help with communication difficulties and dementia, to name but three.
It allows people to express their thoughts in a visual way which in turn can elicit a response from their communication partner. Moreover, solid research has shown that Talking Mats increases engagement in people with different communication difficulties.

Click here to see our publications

Standard Training 

Attending one of our standard training courses will:

  • Provide you with a range of practical tools and models that will help you evaluate a person’s ability and their level of support required
  • Give you a holistic framework to support people with communication disability
  • Build your confidence in using Talking Mats
  • Encourage your creativity in using and applying Talking Mats in different situations such as goal setting, sharing views, supporting disclosure, enabling decision making…..the list is endless!

You can either

Train the Trainers courses 

However, you cannot train others unless you have completed and passed one of our residential ‘train the trainers’ courses. We put significant emphasis on our accredited training because without it, the quality and integrity of the Talking Mats framework is diluted and damaged.Talking Mats is based on extensive research and although it may appear simple, there are many complex layers involved in using it and we need to be confident that trainers have an in depth knowledge and understanding of these.

In order to apply to become a Talking Mats trainer you have to have completed the standard training (above), be experienced in using Talking Mats and fulfil the course requirements. 

Intellectual Property 

Talking Mats was originally developed at University of Stirling and the Intellectual Property is held by the University and Talking Mats Limited is assigned the sole rights to Talking Mats. Talking Mats is registered as a trademark. Only training that is sanctioned by us is recognised and anyone training others without being a recognized Talking Mats trainer is infringing Intellectual Property and copyright.

Signposting and sharing knowledge 

We are of course delighted when people share their knowledge and experience of Talking Mats and signpost others to the website and resources.

The following article has just been published:

Murphy, J., & Oliver, T.M. (2013) The use of Talking Mats to support people with dementia and their carers to make decisions together.  Health & Social Care in the Community Health and Social Care in the Community 21(2), 171–180

A resource which has been developed form our research is Talking Mats (bronze) Dementia and Social Care  Click here

For further information please contact info@talkingmats.com This email address is being protected from spambots. You need JavaScript enabled to view it.

The Talking Mats Team have been funded by the Scottish Government to adapt the CARE Measure to make it accessible for children and to examine if the Paediatric CARE Measure (PCM) can be used to gain the views of children or parents attending AHP services. It is a patient-centred measure of relational empathy. It measures patients’ experiences of the interpersonal aspects of clinical encounters. It is recommended that the PCM is used by all Paediatric Allied Health Professions as standard practice. This should be supported by AHP Child Health Leads and will inform the self-assessment component of recommendation 5.6 in the AHP National Delivery Plan and will be integral in the development of the AHP Children’s Services Plan (Recommendation 4.1).

For information about the research project which was carried out to establish the feasibility, reliability and validity of the PCM please click on the following links:

Paediatric CARE Measure – Phase 2 Final Report

Paediatric CARE measure – Phase 2 Summary

For copies of the AHP guidance, PCM forms and information sheets please click below

Paediatric CARE Measure

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