Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, president of Health Literacy Consulting, founder of Health Literacy Month and your host of Health Literacy Out Loud.
In these podcasts, you get to listen in on my conversations with some truly remarkable people and hear what health literacy is, why it matters, and ways we all can help improve health understanding.
Today I’m talking with Bonnie Bartos, who is a physician assistant and certified diabetes educator in the Mayo Clinic Health System. She focuses primarily on primary care, diabetes and anticoagulation care.
Bonnie is also a longtime health literacy advocate who uses pictograms, as well as many other formats, to teach patients who have poor literacy skills, use English as a second language or have disabilities. Bonnie knows the challenges of health education well, as she herself has a severe to profound hearing loss.
I met Bonnie and her wonderful service dog at a recent health literacy conference. She had so much great information to share that I invited her to be a guest on Health Literacy Out Loud. Welcome, Bonnie.
Bonnie: Thank you. It’s great to be here.
Helen: I’m so honored that you’re a guest on this. I’ve wanted to focus on issues of health literacy and all aspects of different abilities or, as some people say, disabilities. I’m a huge champion of that, and I’m delighted that we’re talking about hearing loss.
Let’s put this into context. You describe yourself as having a severe to profound hearing loss. Can you just clue us all in? What is that spectrum of hearing loss and what are the right terms to use?
Bonnie: Normal hearing is 20 decibels or below. Twenty to 40 is considered mild hearing loss, 40 to 60 is moderate hearing loss, and 60 to 90 is moderate to severe. Beyond the 90 decibel mark is severe to profound.
Helen: That means that’s the loudness that someone cannot hear?
Bonnie: That would be the lowest tone that someone would be able to hear. With me, the lowest tone that I can hear in my left ear would be something in the range of 95 to 110 decibels without my bone conductor connected.
Helen: When I met you, I saw your service dog. She was wonderful, but you also have hearing aids. Is that correct?
Bonnie: That’s correct. I use what’s called a behind-the-ear, or BTE, hearing aid on the right. That’s just a standard over-the-ear with the little adaptor that goes into the ear canal. I use that on the right side.
On the left, I couldn’t get the benefits from the behind-the-ear hearing aid any longer, so I had a BAHA, or bone-anchored hearing aid, put in. They put a titanium snap into the skull. It binds to the bone.
Once the bone binds to it and everything heals up, you can snap an amplifier or a sound processor onto it. It will move the little piece of titanium, which then moves the bone and conducts the sound through the head.
Helen: Whoa! That’s high-tech surgery. With all of that, can you hear the same way I can hear?
Bonnie: I don’t necessarily hear the same way you would hear because you can process materials as they come in. I have to process them, and then process them once again and put everything together.
Helen: What do you mean process them again? Do you hear it twice or is it delayed?
Bonnie: I don’t hear it twice, and it’s not necessarily that there’s a delay. It’s more of an aspect of putting everything together. I may hear parts of a statement clearly and some of it not so clearly. Based on context, maybe I’ll bring it all together.
Helen: I see. Even as you and I prepared for this podcast, we talked about that there may be times when you will ask me to repeat what I’m saying. I’m trying to speak slowly and clearly, but not annoyingly so.
Bonnie: Thank you. That’s one of the biggest errors that people make in communicating with people with deafness or hearing loss. They say, “Do. You. Need. Me. To. Repeat. That?” They just distort the sound by drawing everything out instead of having a nice, clear statement.
It’s harder to lip read when somebody exaggerates their lip movements like that and it’s harder to get the true statement out of that. A lot of people don’t realize that only about 30% of what is spoken is really visible on the lips.
There are some people who are very good at lip reading who can get more than that, but the average person doesn’t get more than about 30% out of what we can see on the lips.
Helen: I want to talk more about that. I’ve also written some articles over the years about using sign language and lip reading. In fact, I even have a chapter in my book, Health Literacy From A to Z, about hearing loss.
I want to talk about all of those strategies, but before we move on to those, I want you to clarify for our listeners if there is a difference for people who first could hear and then lost their hearing versus people who were born never able to hear.
Bonnie: The primary difference is with the ability to vocalize or speak. Some people who have been able to hear and then have postlingual hearing loss, or hearing loss after speech was acquired, may still sound different if they’re not wearing any form of amplification, but they may have a clearer speech pattern.
Someone who has been either profoundly hard of hearing or deaf from birth or before language acquisition may have a speech pattern that may be harder for some to understand, though many do well with the difference in education.
Also, I think that sign language is being incorporated into the school systems now and interpreters are available. That’s helping with language acquisition and sign language awareness. Many years ago, sign language wasn’t permitted as a form of communication. They taught oral only. It’s unfortunate, but it’s nice that ASL is now fully supported.
Helen: Your speech sounds as fluent as mine, so I’m assuming that you had language first.
Bonnie: Yes. Mine is a postlingual hearing loss. I started to lose my hearing from recurrent ear infections early on, and then I had several other illnesses that worsened my hearing. In 1997, I was injured. I was on call in the emergency room and I was struck by lightning. It was my worst night on call that I’ve ever had.
Helen: You were struck by lightning through the telephone.
Helen: I shared that story with a few people once you told me that. Everyone says, “I will never talk on the phone in a storm.”
Bonnie: That’s the best thing. It’s best to just avoid it.
Helen: That’s a lesson learned from you, but we have a lot more lessons to learn from you. Thank you for sharing your story and putting all of this into context.
What I really want to focus on is what all of us can do to help improve communication. You bring so much to this conversation as both a clinician yourself and someone who has hearing loss. What do you want all of us to know when we are communicating with people who have hearing loss?
Bonnie: The first thing to realize is that not everyone who has hearing loss is able or willing to wear hearing aids. Not everyone will benefit from them. It depends on your type of loss, the severity of loss and things such as that.
Helen: We shouldn’t be judgmental and say, “Go put on your hearing aids.” It’s not like wearing glasses.
Bonnie: That’s right. It may also be because the person may have acquired hearing aids that may not have been fit properly for them or aren’t currently performing well enough for their current loss.
Helen: When we meet somebody who has a hearing loss or who we think may have hearing loss, would we even know it? What should we do when we begin that conversation or interaction, whether it’s with a patient or someone in the community?
Bonnie: Part of it is that you may notice they may concentrate on your face. They may look at your lips and watch you speak. They may also move in closer or angle their head a little differently if one ear is better than the other. They may move closer to you, find an area that has better lighting, or even switch sides if they have a better ear so that they can facilitate the conversation.
Helen: Would we expect that the other person would be very open in saying, “Hello, Miss Nurse, Mr. Doctor or Physician Assistant. I have a hearing loss,” or is this something we have to figure out as we go through?
Bonnie: People have a variety of responses. Some are very open about it and others won’t address it for a variety of reasons. Some think that it’s other people who aren’t loud enough or who are too loud at times. Others know they have hearing loss but don’t want to wear a hearing aid because they don’t want it to be visible.
I always enjoyed one audiologist’s sign that I saw years ago. He had a sign in his sound-testing booth that said, “Your hearing aids are not nearly as obvious as your hearing loss.” That is so true. I don’t care how big mine are. I just want them to function.
Helen: As clinicians, we could also initiate that conversation.
Bonnie: That’s correct. One way to do so is to say, “Is this an okay volume? Are you able to hear me alright at this level?” or to ask a question that requires a repeated statement or some response that’s not a yes or no.
Helen: It’s almost like those good health literacy principles for the teachback. Use that even at the beginning.
Bonnie: Yes, use that at the beginning.
There are many people who have hearing loss or literacy concerns who, instead of saying something because they don’t want somebody to know they may not understand or that they may not be able to read the material if it’s a literacy issue, they may just say yes or no.
Then you’ve lost your opportunity, or it may even contribute to other health issues if they truly didn’t understand and just missed the whole topic.
Helen: Thank you for helping us get off to the right start. Now what? How can we communicate in ways people with hearing loss can understand?
Bonnie: The other thing is to make sure that your lighting is proper. You addressed many of the things in your website information on addressing people with hearing loss.
Helen: We’ll have that URL at the bottom of your Health Literacy Out Loudweb page.
Bonnie: That will be great. The big thing is to make sure that you’re facing the individual, that you don’t put your hand in front of your mouth, and that you speak clearly and face them.
If you have to turn, just say, “I’m turning for a moment. Then I’ll be back and we’ll continue the conversation,” so they don’t think the conversation is continuing and they’ve missed something.
Helen: That’s a really helpful hint. Thank you very much. What about men who have beards and moustaches or people who are chewing gum?
Bonnie: Those can create significant issues. The facial hair can make it much harder to lip read someone, and also those that don’t move their lips much are very difficult.
Sometimes, depending on the surrounding sound intrusion, you may be able to still do okay regarding communication, though there may be some issues with similar words. I know one thing that catches me are the words 15 and 50. I always ask, “Is it five zero or one five?”
Helen: You initiate it too. Somebody else who had hearing loss gave me a different example. She said the words “bed” and “men” look the same to the other person.
Bonnie: That’s true too. There are many things that look or sound the same. Mushroom and washroom look fairly similar, but they’re totally different items.
Helen: Go to the mushroom and wash your hands.
Bonnie: You can get that from context, unless you live in a forest.
Helen: You’re using a lot of technology. I want to hear about the technology, but I also want to hear about the simple, everyday strategies.
Bonnie: The other biggest thing is to make sure the lighting is proper.
Helen: What does proper lighting mean?
Bonnie: It means that you don’t want to be in a dimly lit room so that you can hardly see the other person. That makes it much more difficult to see things like facial expressions, lip movements and things like that.
Helen: We talked about lighting and enunciation. What about writing things down or drawing pictures? Does that work?
Bonnie: Yes, it can. It depends on the person’s literacy level and if they feel comfortable with their literacy level. Some people do not. One thing to start with is asking them how they prefer to learn new information.
Helen: It’s the same way we would do it with anyone.
Bonnie: Yes. Drawing pictures actually works fairly well if you can depict what you intend to.
Helen: I know that you’re a big fan of pictographs. You’ve done a lot of work in that.
Bonnie: Yes, and it works quite well. I’ve drawn numerous pictograms regarding diabetes education. I have a series on blood thinning, congestive heart failure and asthma. That works quite well because many people can get more from the pictures. There is very minimal wording with some of them. Some of them don’t have any wording, so it works quite nicely.
There is also another option if you don’t feel comfortable with that process. Another way to go about it is to use analogies.
Helen: This is like that.
Bonnie: That’s correct.
Helen: I’m always a fan of those.
Bonnie: If I have someone in my office and they say, “I’ve been eating,” and their glucose readings are all over the board, I’ll ask, “How frequently do you eat?” They may say, “I eat once in the morning.” Then I’ll say, “When do you eat again?” They might say, “I might have a snack at 9:00 at night.”
I’ll say, “It’s important for you to eat three meals a day to help your blood sugar control.” For that I would use an analogy. Let’s say it’s somebody who does auto work. I could say, “Eating on your meal plan right now the way you’re structuring, it would be as if you’re going to go to the next largest city over 50 miles away on an eighth of a tank of gas.”
Helen: You would make it real for his or her world.
Bonnie: I would try to. I would say, “You can’t stop for any more fuel. You have to go there, do your errands and come back. What’s going to happen?” They’ll say, “I’m going to run out of gas.”
I say, “It’s just like your body. If you fill your fuel tank, you’ll be able to get your errands done. If you fill your fuel tank by eating your meals, you’ll be able to get your stuff done.”
Helen: Thanks, Bonnie. I really like that example. You talked in the beginning about some of the high-tech devices you were using. Are there high-tech ways we can communicate more clearly with people who have hearing loss?
Bonnie: Yes. There are several things that can be done.
The other thing that people need to realize is that not everybody who has hearing loss or deafness uses ASL, or American Sign Language. Many people do, so you may be scheduled to see someone who requires an interpreter. That’s fantastic. It’s nice that more of them are available.
There are also some video interpreter relays available. That does benefit the patient population that requires ASL interpreter services.
Helen: I just saw a website called www.DeafMD.org. That’s a lot of health information done in sign language. There’s much more available. It’s very exciting.
Bonnie: Yes, there is. One of the moves of that organization is that they want to help promote the awareness of healthcare acquisition and the difficulties in healthcare acquisition for people with deafness and hearing loss.
Helen: That’s wonderful. Is there anything else out there that you want us to know about?
Bonnie: The other things that are available out there are amplifiers. There are several different ones. There’s what’s called an infrared amplifier. There are FM amplifiers as well. Some clinics will use either of those.
Helen: It’s like when you go to a play and you can get something when you pick up your tickets.
Bonnie: Yes. That’s a very good example. Many churches will have FM systems or infrared amplification systems. Many of them work on what’s called T-loop, or a telecoil loop system. Those are wonderful systems. The looping or wiring setup is structured within the area that those products are going to be used in. When somebody has one of the little devices with them, the sounds will go from that through the cord that’s with the amplifying device and feed directly into some peoples’ hearing aids.
It doesn’t work for everyone because you need a T-switch on the hearing aid.
Helen: Bonnie, there is so much. We can’t get to it all. I’ve learned so much from talking and listening to you. Thank you for all of that.
One last question I want to ask about is your service dog. Tell us about her. I know you have two now.
Bonnie: Yes, I do. We’re training a new one. Ranger is five months old, and Mickey is 12 years old. She is doing a great job. She helps me with my hearing. She wakes me up in the morning when the alarm clock goes off because that’s one thing I won’t hear.
She lets me know when the phone rings. If I’m far enough away from the phone, even with my hearing aids in I may not hear it. They let me know when that goes off. Ranger is actually doing those two things as well already. They’re doing quite well. She’s still working hard even though she’s 12. I don’t want to wait too long, so we’re starting early.
She doesn’t come with me every day. She comes with me mainly when I do paperwork. Some patients are allergic. I don’t want to aggravate their health conditions. Some people fear dogs. I don’t want to aggravate their health conditions either.
I generally function all right during the day when I have my hearing aids in and my amplified stethoscope. I have a hearing aid directly in my stethoscope as well.
Helen: That’s interesting. I noticed you out of a crowd of 300 or 400 people because you were with your dog. I’m so glad I met you, Bonnie. I’m so glad you shared some of these many lessons learned for all of us who want to communicate more clearly. We’ll have a listing of some good websites and resources to go to in order to learn more.
I want to thank you so deeply for being a guest on Health Literacy Out Loud.
Bonnie: Thank you very much for having me. It was a lot of fun.
Helen: I learned so much from my conversation with Bonnie Bartos, and I know that you did too. There will be a written transcript of this podcast available just a few weeks after it comes out. It’s the right thing to do, and it also makes it accessible even to people who struggle to hear.
As far as this work that we’re doing in health literacy, we all know that it’s not easy. For help clearly communicating your health message, please visit my health literacy consulting website at www.HealthLiteracy.com. While you are there, sign up for the free enewsletter, What’s New in Health Literacy Consulting.
NewHealth Literacy Out Loud podcasts come out every few weeks. Subscribe for free to hear them all. You can find us on iTunes, Stitcher Radio, and on the Health Literacy Out Loud website at www.HealthLiteracyOutLoud.com.
Did you like this podcast? I’m sure you learned something new. I sure did. Tell your colleagues and friends all about this. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.