 So, I have the pleasure of introducing Anitha, who is a registered midwife from Uganda who has worked at the Malaga, and I apologise for my mispronounceations, Specialised Women and Neonatal Hospital. She's got 12 years experience with referee practice, both clinical and research. She's part of a team that has been developing an application to bridge the communication gap between deaf patients and health workers. She's communication and advocacy lead for the young midwives leader in Uganda. She's currently doing the young midwife leadership program being offered by the ICM. She's not only published, but she's passionate about advocacy and becoming a voice for many in her care and colleagues to work and influence policy through evidence-based practice. So, I'm now going to hand over the presenting to you. Thank you so much, Liz, for the introduction, and I welcome everyone to this presentation. Good morning, good afternoon, good evening from wherever you are. I'm not going to introduce myself, I'm going to go straight to the slides. I've been a midwife and I've been able to work in private not-for-profit hospitals, public hospitals. In these hospitals, we encounter so many different people that come to us, and as a midwife, I've experienced having to deliver a deaf mother who comes when they are pregnant, and I'll start this presentation with what happened, a small story about my experience with this. So, I was working in a regional referral hospital, and I get a deaf patient in that night who was in Leba, and this, I didn't know how to communicate with this deaf patient. She had an attendant, and sometimes I would feel there is some privacy that is needed for these mothers as well when they come, but at that particular time, I didn't have an option but to engage the attendant who was an auntie to come and help me to communicate with this deaf patient. And I came to realize that this mother was ripped. A teenage mother, she was about 17 years, she was ripped, she couldn't allow a person to touch her. So, I felt that maybe because of her past experience, that's where she could not allow anyone to even examine her. It was very, very challenging, even I couldn't, I was unable to do a VE on that very mother, and she stayed in Lebasut. I decided to put her in Lebasut all the time. I only managed to listen to her, but after a long struggle of involving the attendant, of talking to her, she continuously talked to her about the importance of examination, but she refused completely to be done a VE. And at the end of that day, this mother delivered. Thank God she delivered the live baby, but she delivered from the ground. She felt something pushing, pushing her, and she went off the bed and delivered from down. It was a very bad experience. We managed to have a live baby, but now delivering the placenta became a challenge. She couldn't allow us. So, we had to monitor and the placenta was able to be delivered. We had to be very cautious about her bleeding. So, we kept her in Lebasut, monitoring her. She couldn't allow any of us to touch her. So, that's why I felt that it's very important for them to receive the care that other people who can hear us should receive. It's very important for us to be able to communicate, to know how to communicate with deaf patients when they come to our hospitals. So, we came up with an application and we call this application digital speech assistant, which is to help to make healthcare accessible for the deaf patients. We don't want to leave anyone behind. So, globally we have about 5% of the population who are deaf. These include 34 million people to be children and 432 million adults. And in Uganda, we have over one million deaf persons. That is according to the statistics that we had done in 2014. And for us to communicate to them, there is always a need for a third party that could be a relative, that could be an interpreter. And we also have limited or sometimes completely no sign language interpreters in our hospitals. So, what is there that you can use to help bridge the communication gap between the deaf people and the health workers? So, there is the use of the sign language interpreter, as I've said, but these sign language interpreters are very few. The certified ones, those ones who have gone to school, they've studied the sign language. They are very few. And also they compromise the privacy and the confidentiality of our patients. There are times when a patient would want to communicate something with a health worker without any other person. But because you can't communicate to them, you have to include another person to come in. And at the end of that day, there are things that these deaf patients will be able to disclose, and there are those ones they will not be able to disclose because they feel they can't talk about them when there is another person around them. Then also, these sign language interpreters are very expensive. They charge hourly. The more time you spend with them, the more hours you're going to spend with them. But remember, this is a patient you've gotten. You want to send them maybe to do an ultrasound scan, that means an interpreter will go with them. You want to send them to the lab, that means an interpreter will have to go with them. So, the time they'll spend will be more and they will be charged according to the time they've spent with them. Then there is use of sign avatars. But then the sign avatars, they will also need an interpreter and they will change speech into sign language only. And then sign language varies according to countries. So they are not very reliable and they're not very effective to use in communication with the deaf people. So what have we thought of? Or what are we working on? So we are looking at having a software application that is going to be used in our hospitals and it can be installed on devices. It can be a phone. It can be a tablet. It can be a laptop. And it's a dear user at one instance. We don't use internet. We use Bluetooth to connect to the different phones. And when you display, you will log in according to who you are. So if I'm a patient, if I'm a deaf patient, I'm going to log in as a deaf patient. And the other person we log in as a health worker. And then for that deaf side, it will have predefined health work questions, the most commonly questions that we ask at the beginning. And they will be either in sign language. They will be displayed in either sign language. They will be displayed in either a text or they will be displayed in an audio because we have different categories of deaf patients. And this deaf patient will choose what exactly they need, what exactly they can use to communicate. If they are comfortable with the sign language, the questions will come up in a sign language. If they are comfortable with the text, then their question will come up in text form. If they are comfortable with audio because we have some deaf patients, we are able to hear but they can't speak. So they will actually get their audios. So that will depend on the person sign language. Then as you ask this question, as a clinician, as a health worker, you're able to get to know how that conversation will guide you to know where do I send this patient? Do I send them for lab investigations? Do I send them to do an ultrasound scan? Do I treat them? So it will be from the history you've taken that will help you to have a clinical diagnosis and treatment. And at the end of that day, we are able to have a printed out record, a printed out document for record keeping, like any other patient will come in and they have files. So we are going to be able to have a document, a record that we're printing out and we are able to give to this patient and also have something that we keep in our hospitals. So what are objectives? We want to evaluate the acceptability of DSA application among deaf patients and health workers in the selected facilities in southwestern Uganda. And then we shall pilot the use of DSA among the deaf patients and health workers in those health facilities that we shall select. So the methodology or study design is a cross-sectional study. The study setting will be the public health facilities that we shall have selected and one private facility. And this private facility is the reason we chose it because it's near the community of the deaf patients in that region. Then a study population will be health workers and deaf patients or the caretakers of the deaf patients in those facilities. Our sample size, we shall look at 70. Objective one, we look at 76 deaf patients or the caretakers and three health workers. Then objective two, we look at those ones who would have accepted to take part in the first objective. The data collection tools, we shall do data collection and we shall use some structured questionnaires and then we shall analyze our data that we've gotten. Then the ethical consideration, we shall request from Marra University of Science and Technology, the research ethics committee and then we shall also look at having approvals from the Ganda National Council of Science and Technology for us to be able to carry out our study. So what are our achievements so far? We are able to win a grant of about 100 million gandan shillings that is about 238 US dollars. Then we are able to buy the project equipment to use, which include the tablets, the phones and the laptops. We've been able to have content developed and translated in sign language for version one of our application and we've actually fully developed our application. Then we've been able to get the first approval, which is from Marra University of Science and Technology. What are the challenges we face as we are working on this? So with the COVID-19 pandemic delayed the content development because I think we've had a lockdown for almost a year plus by the time the COVID was very, very bad. Then during the development of the sign language, there was unfulfilled deliveries by the company we contracted to do that content and this had to make us look for other to outsource other companies that can help us with the development of sign languages of what we had put down and it affected so much our budget and our time. Then some of the sign languages that were developed actually did not tally with the content that we had given them. So we had to repeat them. Then we are having back and forth comments because the research institution, the research board fields like these are vulnerable people, so we had back and forth comments. So it took us so long to get the first approval. Then our developer had challenges with the interpretation of sign language while including the communication algorithms. So what are our next steps? We are looking for more funding to take this further to be able to do the research to actually go out in field and work on this. We are looking at submitting our documents to the Ganda National Council of Science and Technology. Then we prepare and carry out our feasibility and acceptability studies as soon as we get the relevant approvals that are needed. That is our team and because I'm on this team because I have the experience with, I have the clinical experience and I've handled some deaf patients in my career and we have also other doctors who are on the team, implementers. We have a sign language interpreter and we have a public health specialist. So thank you so much for listening. I'm happy to present to you this. Thank you. That was brilliant and such a needed concept. So while people are writing in questions, we've also got people from Nigeria and Uganda who've come in as well. Celine thinks this is brilliant. She's also asking a question. Do you think the basic sign language should be taught in midwives formation and education? I think that would be very, very important if the resources are there. If it can be done, it's very, very important because it wasn't a nice experience having a patient that you can't communicate to. So it's very, very important if it can be put in the curriculum, if it can be put in the hospitals, it would be very, very... Maybe that's a challenge for somebody to do a potentially a PhD is to create a universal midwifery and birthing sign language collection of signs because Catherine's saying that she's surprised sign language is not universal. There's very much distinct differences and it's not just the accent between the different hand movements and single and dual hand movements as well. An interesting and educated presentation. Thank you Anita. This is very interesting. I wish you success in the project. So where have you tried to get funding from? Where are some of the places that you've attempted or have people given you ideas of where to try for funding? So the first funding we got was from the Ministry of ICT and gender in Uganda. So we wrote to them and they were able to give us the funding. We've tried Ministry of Health but it has not given us more funding. We are looking out to other places where we can try and get more funding to continue doing this. Are there any non-government or other organizations that work with the deaf that you could possibly partner with? Yes, there is the Ganda National Deaf Association but sometimes we've approached them and they were able to actually identify for us the sign language interpreter that we are using right now and that was the best at the moment what they could give us. Sheila's just written in here. Deaf does not mean illiterate so many may be able to communicate in text which you went through that they had the option to pick. Communication needs to be by directional communication. It's one thing to send the predetermined questions from the healthcare provider but one needs to know what the sign responses are. So how do the women who are deaf, how do they then input their answers or responses to the healthcare workers in the app? So we have that so when they receive depending on what they've chosen so when they receive the question because the question could be the predetermined question could be how are you feeling so they are going to tell us how they are feeling so there is an option of them saying of them clicking on I'm not feeling fine I have a headache or I have this but in case there is no answer among those ones they are able to either put it in a text they're able to put it in a sign language because there is a camera on this on the device they are using so they sign language and we shall get our feedback the other side. So we are putting those options it was for the initial version of this but as we put it out there to do this study we shall be able to get more feedback and we see what else is needed that we can incorporate in this but they also have an option in case one of the answers that we've put in there or within the predefined questions and answers is not there they either writing or having a sign language or actually speaking because we have those deaf people who can speak but they cannot hear. So the camera allows their signing to be recorded and then in the app it will be matched to a sign that's already in the app memory. Yes only that the challenge would be if you're dealing with this patient and they've they don't have the official sign languages the official signs that they're supposed to use that will be where the problem is but we want to first take it out there and see how it works the version one of this then we can see what should we include what are we missing what have we missed out because it will be after we've done this study that we'll get to get more guidance to continue and develop maybe version two or version three of all this and maybe we can only put it out there not only in hospitals we can expand it to other places we can have it in the banks we can have it in what's we can have it in all these other places. You're going to start somewhere absolutely um so I'm saying there's sign language in many different languages English sign language is different from the French one for example yes another question from Sheila how are the predefined questions determined so these predefined questions were determined according to if I go to the hospital what are those most common questions that every other health worker would ask for would look for so definitely look when you I'm going to give an example then I'll ask them how are you yeah how are you feeling they will tell me I'm not fine then I'll ask what is your problem so the initial start of this will give us a basis of they have told me they have a headache maybe they have a fever maybe they have this so where can I send them so they are those the most common questions that are being asked within our hospital settings so we had to look at the files from different places different facilities and you look at the files and you see what history do they take and then we based on that and then interesting paper in itself sorry that would be an interesting paper in itself to see the differences of history taking in different areas yes so we picked the most common questions that are in those files those are the ones we decided to put under our predefined questions but as we go out as I've said when we do this we shall get to know what else did we leave out what can we include did we put anything that wasn't really necessary but is in this application so that's how you're going to be able to tell for us to have a basis to develop our second version or third version of this application fabulous um Sheila's got some great questions here um Sheila is working on a basic anti-natal text to translate from English to Chiquiwa sorry I've probably said that completely wrong to accommodate a local population of refugees maybe this DSA can accommodate various translation options as well so that would be in future generations that you could have once you've got the because you said it's English and in local languages so we are planning we are looking at the first version will be definitely in English but we are looking at other languages within our country or even outside the country how can we best put it in the language that even the deaf person who doesn't know English can really understand and they use this application so we plan to work on that different languages and that relates down to somebody else and I'll come back to your other comment Sheila that for those who may not attend formal education may use local signs different depending on the regions they come from different from the Uganda sign language how will you cater for them that's very true because we realize there was someone who said that we have sign language varies so the same sign language that we shall have maybe in western will be the same language that will be in northern Uganda but if someone has gone if someone has done a formal educational sign language they will have the same sign language in Uganda but if they've not that's why we are saying we can maybe choose something else for them can they use maybe audio can they use text we are trying to make sure that at least we cater for all those who are not able to use some of these of the same language that we've put for them or where the same language may vary cool and I'm going to go back to Sheila's comment that I jumped over just there um there was a question about introducing sign language into the curriculum one could start with basics for example face the person so that they can read your lips and facial expressions don't cover your face with hand movements make sure you're in a well lit place so that you can see absolutely agree and COVID has made that much harder with the precautions as well because we still haven't got a mask that works with COVID can I ask is it have you thought about while you're searching for more funding have you thought about actually doing a survey and actually with the the terms that you think are going to be common actually doing a survey and asking a whole pile of people who sign and who are deaf or who work with the deaf what their signs are for these words or for these kind of statements and actually see what's being used out there and to get a base understanding then of some of the common signs so we've tried to do that but on a very very small scale it was like an in-house artist of the sign language but I think maybe at a later stage we can go out there to the public to the people who are deaf and maybe they're from some of the different regions and we try out that but according to what we've done so far the deaf people that we will ask about the sign language that's how we go to know that some of the sign languages we have we are not corresponding with actually what we are meant for them so what the official is yeah yes yes and that's like like speaking in a local dialect that a village will have or a certain area will have as opposed to what the formal education of formal language is and it's just through sign instead of verbal um Sheila's typing any other questions or comments getting good help is always hard when you trust somebody to do something can to produce a product for you and then they don't kind of work through and give you what you want because it costs money it costs time and it costs momentum sometimes as well dance there's a couple of people who are typing and hopefully the rain here isn't interrupting too loudly coming through um Sheila when learning sign language you really understand the language is culturally embedded so universal signing might lose meaning yeah very good point it's true very important topic when we know that midwifery practice is very important topic when we know that midwifery practice is relational absolutely