Developing technology to assist dysarthric speakers with communication.
Founded in 1881, The Boston Home serves adults with advanced Multiple Sclerosis and other progressive neurological diseases. Exceptional clinical care, compassion, and innovative programs have earned us the designation “Center for Excellence in Long-term Care” from the National Multiple Sclerosis Society. The Boston Home is the only facility of its kind in New England and only one of a handful nationwide. (source: The Boston Home)
This location has members of our target population-people with speech impairment who may use an assistive communication device. Approval for the visits was obtained from Boston Home staff in advance and we were given clearance to interview residents identified by the speech therapist. Several team members had visited the site previously and we had refined our initial questions with instructor feedback. I had not attended the site before and this was my first visit. We were there to conduct interviews with four or more residents that had been recommended to us by a contact at the home.
The team arrived around 1130am at the home and we split into pairs to conduct interviews with four residents who had been recommended to us by Alex, the speech therapist at the Home. Mansoor and I met with two residents in their rooms and conducted 15 minute interviews with them. Both residents were scheduled for meal time after our interview, so we did not want to keep them too long.
The first resident we met was W. He was in his bed watching TV when we arrived. He was receptive to our presence and we exchanged greetings. We explained the purpose of our visit and introduced ourselves. He has labored but mostly intelligible speech. We had to ask him to repeat his answers or questions several times, but we could converse with him the majority of times.
W does not use an AAC device. He has no interest in using one. When asked about the need for help with speaking, he replied that he can just talk louder when needed. We asked if he gets tired when talking for long periods or when talking loudly, he said that he did not and he only talked loud when he had to. He appeared a bit defiant about not using an AAC and was adamant in his ability to be able to communicate with people. We asked him about his use of technology and he mentioned an audio book player attached to his TV cart. He reports having used this device for 6yrs and he was very satisfied with its performance. He uses the device every day for an hour. He is able to press the play button himself when he is in his wheelchair. His favorite author is Janet Evanovich, and his favorite book by her is One for the Money. There is nothing he would change about the device, which was a roughly 6 by 8 inch unit with large buttons for Play, Rewind, Forward, Stop and a Power button. The unit was bolted in a vertical position on the side of his cart about three feet off the ground.
W appeared to have some use of his hand and he stated that he is able to feed himself though he does have some difficulty swallowing. When asked if he had any difficulties eating he said sometimes he did, but usually he did not need any help. If was having a problem while eating he would drop his utensils to alert the staff that he was in trouble. It was not clear what his diet was or what kind of food caused him problems. He mentioned that he used to use a computer but did not do so anymore. He made some grasping movements with his hands during conversation but it was not clear how much dexterity or strength he had. He did not appear able to get out of bed himself and had a motorized wheelchair. He stated that he was not getting up today, but the response was garbled as to the reason why and we did not press him for details.
The next resident S was in her wheelchair when we entered her room. S was very animated and readily engaged with us. Again we introduced ourselves and explained our purpose. She appeared to have limited use of her left side and did everything with her left hand. She was able to speak in a somewhat deliberate fashion but we could understand almost everything she said. She appeared to grow tired from the effort of speaking as the interview wore on, something she confirmed when I asked her. She does not have an AAC and does not want to use one. She stated that she does not have swallowing difficulties and is able to feed herself with no difficulties. We did not discuss diet with her.
S was very interested in using her computer. She spent much time writing in word and also liked to use the Internet and would Skype with one of her family members in Pittsburgh on occasion. She wanted internet access in her room so she did not have to go down the hall to the machine that was connected. She also wanted to learn how to use Dragon software so she could write faster. She currently has to use only her left hand to do all tasks and she feels very slow. She mentioned that she one time was writing up a list of complaints about the food and she was not able to get the list ready in time for the meeting with the food service director and administrators. She felt bad that she was so slow and had to wait for the next meeting to give them the list. She wants to be able to use speech recognition software to help her write, use email more, and explore things like Facebook and playing computer games. She was also frustrated that she can’t think of words fast enough or loses them when she is typing. She is very near-sighted and that make it hard for her to see the computer screen. She used to wear special glasses to help, but they are broken and getting Medicare approval to replace them was taking a long time. She would like a large monitor that she can see clearly.
She likes to read but noted that regular print is too small for her to read and the large print books are too heavy for her to hold.
My impressions of the facility were that it is very clean and quiet. The stairwells and corridors were spotless, as were resident rooms. It struck me as much cleaner than many of the hospitals that I have worked at. I also found it strange that we did not have to check in with anyone and walked past the front desk with a wave. No one asked us who we were or questioned why we were there. Staff members we did encounter were friendly and barely paid us much notice, and the other residents we saw did not seem concerned with our presence.
All the residents we encountered were in motorized wheelchairs or in their beds. Most were moving about freely on the floor between common rooms and private rooms. The rooms of the residents that we interviewed were filled with many personal items such as pictures and books. They also had different furniture (S had a computer desk and filing cabinet), so perhaps they are allowed to set their rooms up as they please, with the exception of the hospital beds. Each room has at least one large window. It was a very pleasant environment for long term care.
The Home itself is a mix of old and new architecture, and has a 125 year history. The website chronicles a number of upgrades and addition to reach the current capacity of 84 residents. The building is situated on a hill overlooking an expansive lawn and you get the feel of a country estate as you approach. The Home has won prestigious awards for long term care and my impressions are that it is a well-run facility. We did chat briefly with one administrator who asked us about our program and it we had to do a thesis. She recounted stories of her own thesis defense with two advisors who had opposing views, so pleasing one would earn a rejection from the other.
Based on these interviews and the previous visits by the team, we discovered that there are few people using AAC devices except those that are unable to speak. People with speech impairments that can speak, even with significant difficulty, do not want to use an assistive device. It is unclear whether this stems from a stigma of relying on a device, pride, denial or some combination of these and other psychological factors. As a result of the interactions with these residents, we are shifting our focus to using speech pattern recognition to augment their daily needs. For example, we could help S open her email or word processor through voice commands, navigate to her favorite web locations or launch Skype to connect with family. We could assist W with controlling his book playback unit or allow him to control a pure digital format of such a device (possibly allowing him more reading options). We would seek a very simple user interface, and small number of commands initially to provide proof of concept. Since this is a change in tack for us, we need to do background research in this area to see what has been done already and if there is work we can build on.
