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. You will hear what health literacy is, why it matters and ways every one of us can improve health understanding.

Today I’m talking to Charlotte Cushman, project manager for the Training and Educational Resources Program at Perkins School for the Blind in Watertown, Massachusetts. Charlotte has been a classroom teacher and international educational consultant for Perkins. She also served as a Peace Corps volunteer in Malawi, Africa.

I met Charlotte when she sent me an email about a blog post she was writing for Health Literacy Month. This post was all about health education for students who are blind, deaf-blind, or have other disabilities. I was so intrigued with this topic that I invited Charlotte to be a guest on Health Literacy Out Loud.

Welcome.

Charlotte: Thank you. It’s great to be here.

Helen: I’m intrigued by this whole topic. As you know, I care very much about communicating health information to everybody, including those with disabilities. I think that’s what really resonated about the work you’re doing.

Let’s take this from the beginning. When you talk about communicating health information, you put it more broadly as health education. What does that include?

Charlotte: We’re talking about students from birth all the way to 21 or 22, so it really depends on the age and ability level of the kids we’re talking about. Basically, we’re looking at physical education, nutrition, understanding the human body, sexuality and personal safety. We’re also helping the students to be knowledgeable about their own health and to be a good advocate for themselves.

Helen: That’s a little bit different than just health information, as I think of it, that’s more about illness, medication, or a procedure. This is more about how you navigate through life and being as healthy as you can be. Is that right?

Charlotte: That’s exactly right. I think all these areas are part of the curriculum for most students, but for students who have disabilities, especially if they’re blind or visually impaired with additional disabilities, these things do not happen naturally.

Even with something as simple as physical activity, sometimes these kids have medical issues or they’re in wheelchairs. Maybe they have cerebral palsy or different reasons why it’s not easy for them to move. If they’re in schools, they’re not always included in their gym classes because gym teachers might not know how to adapt activities.

Helen: What you mean is that these health challenges are not part of what your students learn on a day-to-day basis. Is that right?

Charlotte: The thing about children who are blind or visually impaired is that they don’t have the same kind of access to information that kids who can see have. We call this incidental learning.

Take the example of a child who’s watching their parent get a glass from the cabinet, go to the refrigerator, get some milk and pour it in the cup. Typical kids see all that. The kids I’m talking about need to actually be taught step by step what’s happening.

Helen: As we grow up, we just see that. Nobody says, “Now I’m going to get a drink of water.” It’s just part of our world developmentally.

Charlotte: That’s exactly right. With physical activity, it’s the same. You don’t have to tell a typical child, “This is how you pick up, carry and toss the ball.” If the child can’t even see the ball and doesn’t know what a ball is, the education has to really back up to provide that concrete hands-on learning to help them understand what we’re talking about.

Helen: There are a few other topics you talked about. You talked about physical activity, and you’re giving some great examples. What about the human body, sexuality and personal safety? That seems like quite a range.

Charlotte: It really depends on the age of the child and their level of understanding. For the human body, they might start out understanding what parts of the body one has. For those of us who can see, we see, “I have two legs. You have two legs.” If you can’t see that, you need to feel that on someone else and understand concretely.

As kids get older and their understanding develops a little bit more, then we get into other areas of how the body actually works and how our systems work. Then they also know when something is wrong. When they have a cough, how can they talk about that? That relates to the lungs. What are the lungs? They may need to be specifically taught things that we understand automatically. In terms of sexuality and personal safety, those are big issues for anybody with disabilities.

Helen: They’re big issues for everybody.

Charlotte: Very true. I think they’re particularly complicated for folks who are not able to communicate easily. If someone is touching a young blind person with additional disabilities, they may not know what’s not appropriate and who they can tell. They need basic information about that.

Personal safety could be anything from awareness of toxins and traffic through things that are more complicated in terms of taking care of oneself and being responsible.

Helen: When you talk about disabilities, can you make that clearer for our listeners? In your blog post, you talk about children who are blind or deaf-blind or have other disabilities.

I want to hear a little more about that because the image that comes to my mind is Helen Keller. I’m wondering if it’s more than that. I’m also wondering if these principles can apply to a larger population, perhaps beyond children or to people with other disabilities.

Charlotte: Those are great questions. Nowadays, we don’t see very many Helen Kellers. The majority of the children who are born blind or visually impaired have additional disabilities. Often, it’s due to prematurity or something where the brain is not fully functioning. You see a lot of other things that go hand in hand, such as global developmental disabilities.

Helen: Like what?

Charlotte: You might call it mental retardation or slowness to understand something. They might have processing difficulties or learning disabilities. Ways that visual information is processed might be different.

There are a lot of ways it becomes more complex for these kids with multiple needs. That means it’s not just a question of putting print text into braille. It’s really a question of trying to make information accessible to someone who may not be able to see or hear normally but who may also have difficulty understanding.

Helen: That actually broadens it. Many of us with an interest in health literacy want to reach the broadest possible population. Along their lifespan, people may have diminishing abilities to see or hear, but it’s also that cognitive part.

I’m really eager to hear from you, Charlotte. What do you do to help, and how can anyone who cares about communicating health information better communicate our message?

Charlotte: That’s a great question. You’re right that whatever is best for someone with the most significant disabilities is actually best for the whole population. If we’re clear communicators, say exactly what we mean and make sure the listener understands the message, that’s important across the board.

For the folks we’re talking about here, giving some really concrete information about what’s happening is the most important thing we can do.

For example, instead of just saying, “I’m going to check your pulse,” a doctor might let the child feel the equipment that’s going to be used for that.

Blood pressure might be a better example. Let them feel the blood pressure cuff and the Velcro and squeeze the ball. Let them have a chance to do all that before it’s slapped on and they’re not sure what’s happening.

Helen: The child would touch it, really squeeze the ball and see what happens and what that feels like.

Charlotte: Exactly right. It’s the same with a stethoscope so they could understand that this is cold and metal. It’s going to be kind of startling. They can also listen and see what exactly we’re listening for with the heartbeat and the sound of breathing.

All those concrete ways would be good for examples.

Helen: Are you also doing a verbal explanation while you’re doing the tactile one?

Charlotte: Yes. I think a little warning ahead of time is good. People who can see can see that there’s something metal coming toward them, and they’re ready for that. For a child who can’t see, that might be very startling. If they’re already a little anxious, it would be nice if they were told ahead of time, “Now I’m going to touch your foot. Where’s your foot?” and go through very concretely what’s going to happen.

Helen: There’s touching and talking ahead of time. What are other ways?

Charlotte: Touching actually can be expanded. If we think about some of those items I just mentioned that are typically in a doctor’s appointment, those might be something you can get a hold of ahead of time to let the child know, whether they’re at home or in the classroom, what’s going to happen.

If there’s a stethoscope in the classroom and they’re shown the stethoscope, they can then understand. “This is something we use at the doctor’s. This means I’m going to the doctor.” If we’re consistent about how we provide that information, it can help them understand what’s going to happen next.

Helen: What about something that’s not as object related? Maybe it’s taking pills, though I guess that has an object in there. There are other issues, such as safety, that are more like concepts or categories than things with activities.

Charlotte: That’s a great question. Sometimes you can actually try to take something a little more abstract and assign an object to it. For example, you may not want them touching a pill, but it might be the pill bottle or something one step out.

One of the keys here that I want to make sure we talk about is that teamwork is really the key. No single person is going to be able to do all this.

You may have a really experienced teacher who doesn’t know anything about the medical profession, occupational therapy or whatever specialty area we’re talking about. Conversely, the physician, OT, specialist or healthcare provider may not have worked with somebody who’s blind with additional disabilities.

Just being able to touch base ahead of time to discuss the best way to handle it is good, preferably when the child is not in the room so we’re not compromising their privacy or making them feel strange.

Helen: Thank you for the example about the OT. I’m an occupational therapist, and I can’t ever recall having a patient who was deaf-blind. I did work with adults, but I can’t recall that situation. Chances are that this would be the first or only person I’ve seen with this. That might really catch me off guard. What would I do? Would I call the teacher or family? How would I do that?

Charlotte: That’s a great question. Usually their referral source would be able to hook together the different people. Starting with the family would be a good place to begin because the family would know who the key people are. Perhaps the child would need to have an interpreter. Perhaps it would be a question of having some discussion about what information everybody is looking for.

Usually, there’s a reason why a referral is being made. Then we could discuss ahead of time what I as the teacher or parent am looking for, and you could have a chance as the OT or healthcare provider to ask any questions you may have. For example, “Usually I use a screening tool that is visually based. How could I adapt that?” You could talk it through ahead of time.

Helen: We’re not alone.

I have a couple of questions related to this. You talked about the role of an interpreter. Tell us about that process a little bit, please.

Charlotte: This would be true for any individual who is deaf or hard of hearing, including folks who have an additional vision loss, so deaf-blind. That’s another thing you’d want to check out ahead of time.

Not everyone with a hearing loss needs an interpreter. Sometimes they use a hearing aid or some kind of amplification device and their speech is just fine. Other times, an interpreter is necessary. Of course, there’s also the question of interpreting for a non-English speaker. It’s always a good idea to check for that ahead of time.

Check with the parent, teacher or whoever made the initial appointment. Just find out what the communication needs are. Sometimes we’ve had kids who use a photo communication system. They bring their photo book with them so they can communicate more easily.

Helen: What is a photo book?

Charlotte: If they’re going to be in a medical situation and there are all those different pieces of equipment that I mentioned, it could show pictures of the different devices for someone who has enough vision to see that but is nonverbal. They could point, or you could point together at the different devices so they could see what was going to happen.

It could be anything that would help them be more relaxed and make the appointment be a success all around.

Helen: Thanks for that. When you say “photo book,” I was thinking of an iPad. How about the role of technology?

Charlotte: That’s a great question. Technology has really opened up the world for all of us. You mentioned the iPad. That’s a wonderfully accessible tool because of the voiceover where speech output is available. It’s actually built into the iPad, so we’re very excited about that in the world of educating blind and visually impaired students because it’s hugely helpful to them.

Helen: It’s so multimedia, too. I just want to tell people that this podcast is auditory only. I appreciate that that can rule out some populations, but there also is a written transcript. It’s a matter of providing information in several different ways, as I understand it. It’s not just going one way and assuming people can understand.

Charlotte: That’s exactly right.

Helen: I have a couple of other questions. We in healthcare are always worried about time. Does that take longer?

Charlotte: It absolutely does take longer. We just need to allow the time it takes. That might be a little preplanning or discussion ahead of time with the parent or teacher as well as taking longer during the appointment itself.

A lot of the people we’re talking about take longer to respond. They need to have things explained more thoroughly, and we talked about giving them that time to touch things to make sure they really know what’s happening.

Helen: Time spent doing this will save time later because you did it correctly the first time.

Charlotte: Absolutely.

Helen: Another principle of health literacy is something called the teach back, which is just one way of making sure your message was understood. Often, that’s saying, “I want to make sure I explained this clearly,” and you ask the other person to repeat back the information in his or her own way. What would you suggest for strategies to confirm understanding so you know the message was understood?

Charlotte: That’s a great question. I think teach back can work just as well for the folks we’re talking about here. If we take that example of saying, “I’m going to listen to your breathing. Show me where I’m going to put the stethoscope,” they can make sure the child can actually do that role-play. “Now I’m listening to your chest. Now you’re listening to my chest. Both of us understand what’s going to happen.”

Helen: It sounds like it’s also building relationships.

Charlotte: Exactly.

Helen: For listeners who want to learn more, and for those for whom this is brand-new information, as it is for me, what are some resources where they could go to learn more? We will also put whatever you mention on the Health Literacy Out Loud website.

Charlotte: I work at Perkins School for the Blind, as you mentioned. We have a pretty comprehensive website, www.Perkins.org. There are a lot of resources on there. You mentioned our health literacy blog. That’s on another one of the Perkins sites that’s specifically devoted to literacy. We’re going to have a link to that on this podcast.

There are also some books available as well as some articles and other websites, depending on which level you’re interested in. If you’re interested in eye health and advocacy, that might be different than if you’re a teacher looking to adapt activities.

Helen: Let’s put some of those on the Health Literacy Out Loud website.

Charlotte, you’ve raised my awareness and addressed a topic that we all need to consider. This world is so diverse. Everyone comes with a different set of skills, strengths and challenges. I thank you so much for giving us these concrete, tactile, and practical strategies to truly communicate in ways everybody can understand. Thank you so much for being a guest on Health Literacy Out Loud.

Charlotte: Thank you, Helen. It was my pleasure.

Helen: I learned so much from Charlotte Cushman and hope that you did too. But health literacy isn’t always 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.”

New Health Literacy Out Loud podcasts come out every few weeks. Subscribe for free to hear them all. You can find us on iTunes, on the mobile app Stitcher Radio and on the Health Literacy Out Loud website, www.HealthLiteracyOutLoud.com.

Did you like this podcast? Even more, did you learn something new? If so, tell your colleagues and friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.