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DBI World Conference 2019 - Effectiveness of a new modality of face-to-face and distance communication in deafblindness

DBI World Conference 2019
Technology stream: Concurrent session 11D
Presenter: Prof Claude Vincent
Topic: Effectiveness of a new modality of face-to-face and distance communication in deafblindness

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DBI World Conference 2019 - Effectiveness of a new modality of face-to-face and distance communication in deafblindness

  1. 1. Effectiveness of a New Modality of Face-to-Face and Distance Communication in Deafblindness Claude Vincent, PhD, OT, Walter Wittich, PhD, CLVT, Bertrand Achou, PhD, economist, François Bergeron, PhD, audiologist, Normand Boucher, PhD, sociologist, Mathieu Hotton, PhD, audiologist Collaborators: Sylvie Cantin and Walter Cybis, Planning, programming and research officers CANADA August 12-16, 2019 17th Deafblind International World Conference
  2. 2. Introduction Technological solutions are essential for people who are deaf from birth when they lose their sight as they get older. Because of their visual lost, they are no longer able to use Sign Language or their usual technological devices. They often find themselves socially isolated due to these difficulties with communication.
  3. 3. Introduction Existing technologies to support communication for people with deafblindness: • TTY braille (no longer available since 2018) • Refreshable braille displays • Electronic braille notetakers • Computer and smartphone softwares Needs for communication solutions vary between each person.
  4. 4. Previous technological trials Clinicians in Quebec city (2016) tested the Deafblind Communicator, an electronic braille notetaker. Results: The device was not very functional for the client with Usher 1 syndrome. It is now discontinued. Challenges: • high cost, $ 9,000 to $ 10,000 • very long to read and write a message • need to reset the device in case of a bug and no warning when the device goes to sleep
  5. 5. Previous technological trials Challenges: • The client could not take any calls because too many steps were needed before he could pick up (12 rings had passed) • Everything being in English, we had to translate words to the client, like MAIL (message), MAIN (menu), or DIALING (composition) • It required 3-4 face-to-face meetings to write a message of 4 to 6 sentences (8 words / sentence), which took 1 hour to achieve! • The audiologist sent a message that said "super".  The client understood "supper" with the vibration of braille under his fingers. He obviously wondered why the audiologist was talking about supper...
  6. 6. Previous technological trials It all started in research after watching a noon talk about a research report and later on, the publication of an article. You could see the link to the research report in French, and the link to their publication entitled Cantin, S., Cybis, WA, Trudeau, S., Poncet, F., Wittich, W, Wanet-Defalque, MC. (2019). Assessment of a Communication Assistive Technology for Individuals with Deafblindness: A Case Study. J. of Deadblind studies on communication. 5, 73-95 Cantin, S. et de Abreu Cybis, W. (2017). Research report (in French). et-des-strategies-de-communication/
  7. 7. Previous technological trials Cantin and de Abreu Cybis (2017) tested a dedicated application on a HumanWare BrailleNote Apex connected to an iPhone, in a restaurant. Results: Face-to-face communication was possible for the client with users unfamiliar with the device. Challenges: 5 out of 9 problems encountered with the device over the 3 outings were related to the software.
  8. 8. Aims 1. To measure the impacts on communication and participation of a communication technology alternative proposed to two clients with recently acquired deafblindness 2. To compare the effectiveness and costs of 3 modalities: – new technology (alternative proposed to two clients with recently acquired deafblindness) – traditional technology (discontinued TTY braille) – no use of technology
  9. 9. Specific objectives 1. To propose new technologies of face-to-face and distance communication, and to document the feasibility to train 2 people with Usher 1 syndrom. 2. To document the impacts on social participation and communication before, during, and after training 3. To document the impacts for the family caregivers before, during, and after training 4. To document the costs (equipment , resources mobilized for training, and the associated costs for the health system)
  10. 10. Methods Research design: Single case study and cost-effectiveness analysis Participants (n=16) : • 10 clinicians • 2 research project planning officers • 2 people who are deaf and who recently developed a secondary blindness, related to an Usher 1 syndrom • 2 caregivers Procedure: 4 steps through a period of 24 months
  11. 11. • Review of all available communication technologies in a 43- page document (including 19 notetakers/braille displays, 17 apps, 3 phones, and 8 softwares) • Choice of the communication technologies through a videoconference meeting with 15 experts (5 researchers, 8 clinicians, 2 research project planning officers, 1 observer from a health funding agency) Step 1  3 months Selection of the communication technologies (focus group)
  12. 12. Step 1  3 months Selection of the communication technologies (focus group) Animation of the focus group consisted in asking questions with the printed document, in 3 rounds : • Can you confirm that the product in RED should not be retained? • Can you decide whether the product in ORANGE should be retained? • Can you confirm that the product in GREEN should be retained? Criteria: availability, braille, weight, portability, minimum 24 braille cells, complexity to use, connectivity, in French
  13. 13. Results for objective 1 The following refreshable braille displays were retained for testing after the focus group: • Brailliant BI 40 • Esys 24 • Braille EDGE 40 • Focus 40 Blue • Vario Connect 24 The ones retained for sure: • Roger Voice app • iPhone model (Android and Windows were excluded) • Other software
  14. 14. Step 2  7 months Testing the communication technologies (feasibility) • Putting together a simulated client (a certified low vision therapist who is blind and already knows braille) and a clinician competent in sign language. This is necessary to learn how to teach, how to train, how to give explanations, and how to communicate face to face and remotely. • Adaptation, programming, and ergonomics of the new technology to make sure it is usable for a person with deafblindness, with the help of one engineer research project planning officer.
  15. 15. Step 2  7 months Testing the communication technologies (feasibility) • Evaluation of the training feasibility with the simulated client, with the help of one Planning, programming and research officer who has a Master’s degree in measurement and evaluation, and a degree in psychology.
  16. 16. Step 3  6 months Experimentation and evaluations with 2 participants • Experimentation: Training to learn how to use the technologies for receiving and sending text messages (2 x 45- 60 minutes per week) • Evaluations: Questionnaires about impacts on social participation, communication, and caregivers burden  Measurement of the costs (interventions, technology, maintenance, internet)  3 months before training, just before training, during training, 6 months after training, and 9 months after training
  17. 17. Step 4  6 months Evaluation of objective and subjective consequences (focus group) • Comparative evaluation of the impacts on participation and communication 9 months post intervention (new technology – traditional technology– no use of technology) • Cost-effectiveness analysis: Measurement of the anticipated costs for the 3 alternatives, and comparison with the impacts on participation and communication
  18. 18. Step 4  6 months Evaluation of objective and subjective consequences (focus group) • The focus group will include the same 8 clinicians who participated in the first meeting. They will receive: 2 participants’ files at 9 months (new technology), 4 medical records of previous clients with the TTY braille (traditional technology), and 2 participants’ files 3 months before training and just before training (no use of technology) • They will have to grade face to face and distance communication on a scale of 3 points, and social participation in a scale of 9 points. They will be asked to justify their grades, and changes will be allowed at the end.
  19. 19. Discussion July 5th - 6 weeks after focus group • The Esys 24 was rejected based on comments from other clinicians • The Vario Connect 24 has been discontinued • The Braille Edge 40 will be available for test (we don’t know yet) • The Brailliant BI 40 and the Focus 40 blue were still retained • The Roger Voice app seemed to be the best for phone communication. It transcripts the speaker’s voice into readable text on the braille display, and the text on the braille display in voice synthesis. The devices will be bought in September to begin the step 2
  20. 20. Discussion Brailliant BI 40 This image shows • Black braille keyboard • Dimensions: 12.2 x 3.4 x 0.7 in • Weight: 1.43 pounds • Adequate number of cells • $2995.00 US • Connectivity (to be test)?
  21. 21. Discussion Focus 40 Blue 5th Gen This image shows • Black Braille keyboard with the 8 dot in color blue • Dimensions: 14.5 x 3 x 0.75 in • Weight: around 1.24 pounds • Adequate number of cells • $2995.00 US • Good reliability of the Bluetooth connection
  22. 22. Discussion Braille EDGE 40 This image shows • White braille keyboard; the 8- dot are in grey and the Braille pins are in black • Dimensions: 12.2 x 4 x 0.9 in • Weight: 1.73 pounds • Adequate number of cells • $2795.00 US • Good reliability of the Bluetooth connection ??
  23. 23. Discussion There are only small apparent differences between the three devices – Braille Edge 40 : more tactile keys of different shapes, the cheapest – Brailliant BI 40 : the thinest – Focus 40 blue : the lightest, the longest and the narrowest
  24. 24. Discussion Certified low vision therapist (simulated client’s comment) In the case of the three braille displays, the most important issue, since they have similar side features (number of braille cells, size, weight, braille keyboard located behind braille cells, etc.), is the reliability of the Bluetooth connection. This aspect is not easy to evaluate, however, because it is by using it that one can know.
  25. 25. Discussion Certified low vision therapist (simulated client’s comment) I have no experience with the Edge 40 and very little with the Brailliant BI, so I cannot comment. My experience with the Focus Blue demonstrates a good reliability of the connection.
  26. 26. Discussion Certified low vision therapist (simulated client’s comment) Remember, however, that a Braille display is only useful (apart from its note-taking accessory functions, for example, if equipped with it) to display information from another device in Braille, example, an iPhone. Braille displays are known devices, the challenge in my opinion is rather to find which device and app will be connected. It is this app that will allow communication and not the braille display as such.
  27. 27. Discussion This study will help to be more aware of communication solutions for people with deafblindness, and to know how braille displays, softwares/apps, and smartphones can work together. The research-clinic-technology mesh is one of the strenghts of this study. Results could encourage health payers to recommend these products if they are proven to be cost-effective. The small sample size due to the research design is one of the main limitations of the study.
  28. 28. Conclusion We hope that for the 18th Deafblind congress, we will have tested one of the proposed solution for distant and face to face communication, as well as for participation. People with a congenital deafness and acquired vision loss need an alternative to communicate, as they cannot use visual sign language anymore. Health payers need to be convinced that online technologies can be cost-effective solutions for communication and participation, and not only human caregivers
  29. 29. Conclusion • My Canadian research team is asking you, as you are coming from all over the world, have you ever experienced one of these three braille displays in French or in another language than English... – Braille Edge 40 – Brailliant BI 40 – Focus 40 blue with an iPhone and a Bluetooth connexion ? • Have you experienced success with other technologies for face-to-face and distance communication?
  30. 30. Acknowledgements