Category Archives: Research

Unspoken voices: Gathering perspectives from people who use Alternative and Augmentative Communication (AAC)

This blog post is from Katherine Broomfield – Speech and Language Therapist, Gloucestershire Care Services NHS Trust. Kath has recently been successful in achieving an NIHR Doctoral Research Fellowship, will start her PhD with Prof Karen Sage of Sheffield Hallam in 2017 and will be working with our team as part of this.


I lead the local AAC service in Gloucestershire; part of the adult speech and language therapy service. We assess and provide basic communication aids such as low-tech, paper-based systems and direct-access, high-tech devices. In a quest to improve our service, I was interested in how to reinforce the quality of the assessment and support that we provide to people in need of communication aids. I also wanted to understand how to improve people’s experience of using them. In 2014, I secured funding from Health Education England South West to carry out a clinical academic internship at the Bristol Speech and Language Therapy Research Unit, under the supervision of Professor Karen Sage.  The objectives of the internship were to: a) search for research literature about how to best support the implementation of communication aids, b) carry out interviews with service users and c) consider areas for further research.

The literature search uncovered limited information about why some people use communication aids effectively and others do not; nor what ‘successful communication’ means to people who rely on communication aids and what they feel best supports them to achieve this. The services users I interviewed reported very different views on successful communication aid use. They also provided some interesting insights into how to improve the support that NHS services provide when issuing AAC equipment. The number of participants in the interviews was small however and they were all adult users of one particular device. By the end of the internship, I had generated more questions than I had answered.

I chose to apply to the National Institute for Health Research (NIHR) for funding to carry out further research into the perspectives of users of communication aids. In February 2016 Prof Karen Sage relocated from Bristol to a post at Sheffield Hallam University (SHU) Centre for Health and Social Care Research. This provided me with the opportunity to establish a team to help me with my research project from the vibrant health research community in Sheffield and, more specifically, to approach Simon Judge at the Barnsley Assistive Technology Team. Simon agreed to join Prof Karen Sage, Prof Karen Collins (SHU) and Prof Georgina Jones (Leeds Beckett University) in supporting me to develop my research proposal, complete the funding application and, if successful, to supervise me while carrying out the research.

At the end of last year I was awarded NIHR funding. My project aims to develop a greater understanding about why people do and do not use communication aids and how they view success with using them. I plan to carry out a more extensive and specific literature review focusing on user perspectives and outcomes for communication aids. I will then complete a series of interviews with young people and adults who use communication aids at different points across the AAC pathway – from assessment and provision of equipment to the use of communication aids in people’s homes, schools and communities. The ultimate aim of the project is to develop a patient reported outcome measure (PROM). The PROM will be made available for use by NHS services to gather the perspectives of people who use communication aids about the equipment and the support they receive.

The project is one aspect of my PhD training programme (the Clinical Doctoral Research Fellowship, or CDRF) targeted at developing practicing NHS clinicians into academic researchers. This scheme is part of the current drive to improve the use of research evidence within NHS services.

I am really looking forward to working closely with people who use communication aids and their friends, families and carers throughout this project. I am also excited about the opportunity of working closely with the team at Barnsley Assistive Technology whose clinical work and research I have admired for some time. I will be setting up my own blog imminently to keep people informed about the project – but in the meantime, I am contactable via Simon and the team. I am passionate about good communication and I still have a lot to learn about AAC, so please get in touch!

 – Katherine Broomfield, Speech and Language Therapist, Gloucestershire Care Services NHS Trust.

 

 

 

Oral Histories and Legacies

Leaving an oral history or legacy is something that can be important to those with life limiting conditions.  Our team works with people with communication difficulties who rely on AAC systems to communicate and I (Nicola) was curious to investigate what services are available for people with life limiting conditions to leave a legacy for friends and families. I have had client’s that have left letters and planned their funerals using AAC systems that family have found subsequent to their death.  I have also had requests that family copy information that is stored on the systems to remember the person by.  However, I had felt that I was unable to support or guide people to services if they do want to leave something for their friends and family, so I went to find out more.

Legacy Service

My self and our team’s clinical psychologist met with the organiser from a local hospice, who coordinate a team of volunteers who support people with life limiting conditions to create an oral history for friends and family. This service has been running since 2013 when it was set up as part of a research project by the University of Sheffield and Macmillan Cancer Support.

The Macmillan service will support people referred to their service to create an audio recording. They do this in a number of different ways and will be guided by the individual.  They offer an interview, desert island discs, personal histories and memory boxes.  They use a crib sheet, but it is very much what the person wants to talk about and the facilitator just offers encouragement.

To do this, the service uses high quality recording equipment, funded by donations, the microphones on the system are small and frequently the person will forget that they are using them.  Recordings can be done either  on site or at the person’s home.  They need a quiet room and the service will offer emotional support.  The service then uses software called “audacity” to edit the audio together – so that the person does not need to do it in one go.  The service reported finding that the process can be beneficial for the person as a reflective exercise.

The Macmillan service have discussed using video with clients – however feedback so far has been that this would not be positive, including for reasons that the person could see physical changes in themselves. This may change in the future as younger people live their lives through social media.

Once completed, the person signs a consent form for who they want to access the recording. A CD is produced or people can have it in a digital format.  They can also consent to have the recording saved with the University of Sheffield as part of the research project to develop a growing oral social history to help future generations connect with real people from the past.  There is very little other research on the topic of leaving oral histories and legacies by people with life limiting conditions.  The research reported benefits for the participants and the importance of it being their voice.

Legacy using AAC

The service in Sheffield does support people with communication difficulties and have found that this takes more planning.  They did have one person referred to their service who used a communication aid, but following discussions this person did not follow through as she felt that the voice was not hers.

I now feel that I can discuss and offer sign post to services that will enable our clients to complete this, if that is what they want to do. It is a very personal thing and is not for everyone. When possible it should be offered prior to deterioration or loss of speech, but this is not always possible.  The hospice now feels that the local AAC service can support them if they have issues support people who use AAC to access the service.  For client’s using AAC it may be a matter of leaving the information in other ways such as in writing, videos, photographs as well as through their communication aid.  If you work with people using AAC I would urge you to offer and support people to enable them to leave a legacy behind and not be held back by their communication issues.

BBC Accessibility Champions

In August Vicky Johnson and Marcus Friday from our Team were invited to present to the BBC accessibility champions event at BBC Media City in Salford.

BBC Accessibility Champions

BBC Media City, Salford

BBC Media City, Salford

This day was organised to bring together many BBC accessibility champions. The group included people who design BBC websites and apps to ensure accessibility. The audience consisted of programmers, user experience designers, researchers and testers, business analysts, assistive technology users and accessibility specialists.

The BBC now has approximately 85 accessibility champions which span across many BBC departments, eg TV, radio, sport and children’s. Presentations were given to explain the ways in which the champions ensure that accessibility is considered early in the design process, and that testing is carried out as a website, app or game is developed.

‘Physical’ ICT Accessibility

Vicky and Marcus, from the Barnsley AT team, were invited to speak at the event in order to provide the audience with an insight into how users with severe physical impairments access technology. The focus was on their clients who predominantly have upper limb physical impairments and sometimes have associated visual and cognitive difficulties. An overview of the Barnsley AT Team was provided, along with some powerful case studies of clients using their AT systems to enable computer access, control of the environment, and access to communication.

Three breakout sessions took place in the afternoon and we listened to the Head of Accessibility and Accessibility Specialists provide an insight into the developments in the accessibility of BBC output in recent years. Part of the discussion focused on how to ensure that breadth of BBC output is accessible to those with visual, cognitive or physical difficulties.

Looking to the Future

The day ended with a fun session spent in the Blue Room. The BBC have dream jobs where Technologists are employed whose role is to keep aware of new mainstream developments which may have an application or scope for development of interest to them.

We tried the Amazon voice recognition system called Echo which uses the protocol IFTTT (if this then that) which provides a flexible system, where for example the system recognises your request and you program it to perform any number of actions e.g. control your environment, interact with an app in order to order a taxi or food or action another command programmed in other IFTTT enabled apps. We also had time to try Google Glass and a relatively cheap head worn display called Glasshouse.

It was a privilege to meet some of the people behind the iPlayer TV and radio apps, including the Good Food site. Overall, it was an informative and enjoyable day which has opened up the opportunity for Barnsley AT Team to work further with the BBC.

Creating a Personalised Synthetic Voice (Voice Banking)

‘Voice banking’ has been discussed quite a lot within the AAC field recently and so, as a team, we have been exploring this and other similar techniques in more depth.

As the team member volunteered to test out the packages available to create a personalised synthetic voice I have spent what feels like weeks recording countless phrases! I have now created two personalised voices, one using ModelTalker and one using My-Own-Voice.  This post is a summary of the experience of creating these voices (including example recordings of the result).  We also have a fact sheet on our website with information about the options.

ModelTalker

Last week it was fantastic to finally hear the results of all the hours of recording into the ModelTalker voice recorder. The process has been frustrating to say the least! I have good quality voice, had access to the quiet surroundings required and a decent microphone and was pretty competent in the IT stuff needed to set up the ModelTalker recordings – but even so it wasn’t plain sailing. At times it seemed impossible to get a “green” light recording  with all parameters at an acceptable level, and so, individual phrases had to be re-recorded numerous times, even though as far as I was aware all environmental factors, recording volume and voice quality were unchanged. The tiring factor, even for me with a robust voice, was telling, and it was difficult to record successfully for more than a couple of hours at a time. Connection at times was lost, and at times the programme froze, which again  slowed the recording process and sometimes meant that the time set aside to record could not be used.

The ModelTalker documentation suggests that the recordings can be completed in 6-8 hours. However, it took me far longer than this and a lot of my phrases were submitted as an “amber” recording; meaning acceptable, but not perfect. Consequently, it is very evident that for most of our clients a comprehensive level of support during the recording process would probably be needed to get the best outcome.

However, on hearing the final product I can safely say that the voice that has been created definitely sounds like me – and creating and using this voice is currently completely free! The speech produced can be a little disjointed at times, irregular English spelling patterns create it some pronunciation difficulties and the intelligibility decreases in longer utterances, but the overall quality definitely shows features of my voice

Alongside this process I have begun working with a client, Greg, who, with support from his local therapist, Jennifer Benson, has created his own ModelTalker voice which he now uses on Predictable. To hear about the process I had just undertaken, from a client’s perspective, has been fascinating . Greg came across similar frustrations to those I have highlighted during the recording process and the tiring effect was very significant for him. However, for Greg, the pay off of having his own voice on his communication app seems to outweigh any of the difficulties he encountered.in creating his voice.  Greg has made a video about his voice banking experience at: https://youtu.be/DYdSTNDYBWE.

My-Own-Voice

After the hours taken to record my voice using the ModelTalker platform, the creation of a personalised voice using “My-Own-Voice” seemed  a lot less time consuming. Although the total number of phrases needed to be recorded were similar to ModelTalker, the “My-Own-Voice” only  took around 5 hours to make. The re-recordings needed were minimal and generally the process was less disrupted, with the recording working consistently each time I attempted to record a phrase. The navigation through the phrases as I recorded them seemed a lot more intuitive and I was able to seamlessly record one phrase after another.

Once more the voice created does sound like me, although there are some definite issues! Certain speech sounds do not sound at all like they should, particularly  word endings and some word initial consonant blends. In connected speech, intonation patterns can sound a little odd at times and the boundaries between words sound quite slurred which definitely has a negative impact on intelligibility.

The My-Own-Voice process is free to record and create  a voice, but you then need to apply  for a costing to use the voice you have created on  a communication aid.

Comparing the Results

For the purposes of comparison, I recorded a phrase as a direct voice recording and then created it using my personalised synthetic speech with “ModelTalker” and “My-Own-Voice”. You can compare the results for yourself by listening below, the phrase I used was “I am sat here, writing this blog, to allow you to compare the personalised voices that can be created by two web based programmes; ModelTalker and My-Own-Voice”:

My recorded voice

ModelTalker synthesised speech.

My-Own-Voice synthesised speech.

FactSheet

Feel free to download the information sheet  we have produced about voice and message banking from our website. This summary includes some hints and tips to think about when considering  the process of  recording words and/or phrases or creating a synthetic personalised voice.

In a future post we will discuss the difference between Voice Banking, Message Banking and other approaches to retaining identity in the use of communication aids.  As we write this post, breaking news is that Amy Roman, an AAC specialist in the USA has created a resource for message banking – MessageBanking.Com . This is discussed on this thread on the fantastic AT ALS email  list.

Choosing the right vocabulary package – a Barnsley AT Team study session

Members of the Barnsley AT Team met recently to spend some time looking at the evidence behind several different vocabulary/language packages for communication aids. This is a key and frequent discussion within the team and we organised a session to help develop our thinking on this.  It also links with the forthcoming research project we will be involved with funded by the  National Institute for Health Research and in collaboration with Manchester Metropolitan University (more on this later!).

Vocabulary packages can broadly be grouped into: taxonomic (categories), schematic (activities), alphabetic, iconic encoding, visual scene displays and idiosyncratic (personalised). Some systems might use several of these methods to organise vocabulary. For this session we chose to looked at the evidence around Visual Scene Displays (VSDs) and considered the following literature (some published in peer reviewed journals, some ‘grey’ literature):

  • Drager, Light et al (2003) The Performance of Typically Developing 2½ Year Olds on Dynamic Display AAC Technologies with Different System Layouts and Language Organizations
  • Drager & Light (2010) Designing effective visual scene displays for young children. 

This work suggest that visual scene displays may:

  • be most beneficial for young children and people with significant cognitive or linguistic difficulties (e.g. Learning Disability, Aphasia, Brain Injury);
  • provide a high level of contextual support;
  • enable communication partners to engage and support the person with communication needs by providing a framework and context from which they can scaffold a conversation;
  •  support real life events and experiences as they happen, by providing a supportive narrative;
  • be highly personalised/replicate real life experiences;
  • provide language in context;
  • shift the focus away from expressing wants and needs and towards social interaction and exchange of ideas and information;
  • reduce cognitive demands by reducing visual processing;
  • access linguistic concepts via episodic memory not semantic memory;
  • exploit human capacity for rapid visual processing of visual scenes.

The above studies also discuss the limitations of VSDs suggesting that:

  • Children with motor difficulties may find it harder to access hotspots on a VSD than symbol grids.
  • VSDs may be more visually complex than evenly spaced symbols in a grid.
  • VSDs are labour intensive to produce and maintain.
  • Jackson, Wahlquist and Marquis (2011), found children performed better with a grid layout and made more mis-hits with VSDs.

We also looked at the paper: “Critical Review: Which Design Overlay is Better Suited for Early Assisted AAC Intervention in Preschoolers: Visual Scene Displays or Traditional Grid Layouts? ” Kaempffer (2013).

Kaempffer reviewed the literature on VSDs and found results of studies looking at VSDs to be inconclusive and limited. Kaempffer was also critical of methodology and statistical analysis used in studies into VSDs. Only one study has included children with communication needs and some studies have suggested grid layouts may be more appropriate.

Our team concluded that VSDs should still be considered as part of the AAC assessment process. However although the literature suggests that emergent AAC users and adults with cognitive impairments may benefit from VSDs, from this session we could not see strong evidence to suggest particular groups of individuals or situations in which VSDs may be most useful.

A number of software packages are available that support VSDs, these include:

  • Tobii-DynaVox Compass, Sono Primo
  • MultiChat 15/Touch Chat HD app
  • Therapy Box Chatable & Scene and Heard

Have you used VSDs with a communciation aid user, have we missed some important literature? We would love to hear about your experience!

References:

Drager, K., Light, J., Speltz, J., Fallon, K., Jeffries, L. (2003). The Performance of Typically Developing 2½ Year Olds on Dynamic Display AAC Technologies with Different System Layouts and Language Organizations. Journal of Speech, Language, and Hearing Research, 46(2), 298-312.

Jackson, C., Wahlquist, J., Marquis, C. (2011). Visual Supports for Shared Reading with Young  Children: the Effect of Static Overlay Design. Augmentative and Alternative Communication, 27 (2), 91-102.

Kaempffer, A (2013) Critical Review: Which Design Overlay is Better Suited for Early Assisted AAC Intervention in Preschoolers: Visual Scene Displays or Traditional Grid Layouts? Poster presentation at University of Ontario. Unpublished/peer reviewed, but available as PDF.

Light, J., Drager, K., & Wilkinson, K. (2010, November). Designing effective visual scene displays for young children. ASHA Conference. Lecture conducted from Philadelphia, PA.. Conference presentation avaliable as a PDF.

Phonemes, Decisions, Identification, Services, Eye Tracking and Assessment!

Phonemes, Decisions, Identification, Services, Eye Tracking and Assessment. This is the range of diverse topics that members of the team will be presenting at the ISAAC 2014 conference later this month. ISAAC is the international conference relating to Augmentative Communication.
The Barnsley AT team is pleased to have had six papers accepted for this prestigious conference. A summary of all the papers is below. If you are attending ISAAC, please come and find Simon or Andrea to chat about these topics!
The work being presented at ISAAC has been supported by Devices For Dignity and Sparks Charity

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Peter’s perspective of his part in our research project

Peter has been involved in one of our research projects for several months and has offered many insightful and practical suggestions which we’ve incorporated to improve our designs. From our point of view he has been a great candidate – full of ideas and never one to hold back on suggestions or opinions. We are already planning working together on future projects.

This article was published in the local MNDa magazine describes Peter’s perspective of being an active research participant. The article has now been accepted for the national MND publication “Thumb Print”.

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