HLOL Podcast Transcripts

Health Literacy

Developing Materials for Adults with Intellectual Developmental Disabilities and Extreme Low Literacy (HLOL #248)

Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and author of the book Health Literacy from A to Z. I also produce and host this podcast series, Health Literacy Out Loud.

Today, I’m talking with Molly Lynch and Linda Squiers, who both work within the Communication Practice Area at RTI International in North Carolina.

Molly has over 15 years of experience developing, implementing and evaluating public health programs with a focus on health literacy.

She now directs RTI’s Audience Engagement Research Program. This includes using human-centered design principles to engage audiences in the development of communication practices and interventions.

Linda has over 30 years of experience in health communication research. She focuses on developing and testing health communication messages and interventions for print materials, videos, campaigns and other online tools. Linda is a Senior Health Communication Scientist at RTI.

Welcome to you both.

Molly Lynch: Thank you, Helen, so much for having us on your program today.

Linda Squiers: Thank you, Helen. We’re very excited to be here with you.

Helen Osborne: I am excited, too. Recently, you sent me an email with information about this project you had been working on with the CDC. The name of the project is “How to Develop Products for Adults with Intellectual Developmental Disabilities and Extreme Low Literacy.” It’s a product development tool.

Wow, I was really impressed by this. I have never seen anything quite like this in all my years with health literacy.

I’m happy to share this with the world and I’m thrilled that you did this. But let’s start from the beginning. Why did you feel that it was important to come up with a tool for developing products for people with intellectual developmental disabilities and extremely low literacy?

Molly Lynch: Helen, that’s a great question. I’ll start and, Linda, please chime in.

This project really came about during the Covid pandemic back in 2020. We were working closely with the CDC on this project, and different disability-serving organizations had come to the CDC right at the beginning of the pandemic and noted that there were not any materials that were really accessible to this audience, which is people with intellectual and developmental disabilities.

There were no materials that were really made for this audience that could describe those protective behaviors that people needed to undertake during the pandemic. There was a real gap there.

Helen Osborne: Thank you, Molly. To get us to all have a mutual understanding of this, when you use that term “intellectual developmental disabilities,” be clear. What are you referring to?

Molly Lynch: That’s a great question to start with, because it’s a really diverse group of people that might fall under this label. But really, intellectual and developmental disabilities are conditions that limit a person’s ability to learn new or complex information, apply new skills or function at an expected level in daily life.

As you can imagine, that encompasses a broad range of different communication abilities. That’s just really important to keep in mind.

When we started this project, we understood that it was a really diverse audience, and so we worked with CDC to kind of narrow in on a group that was likely to have the least amount of information that was accessible to them. Those are people with intellectual or developmental disabilities who have extreme low literacy.

Helen Osborne: Is extreme low literacy a different factor?

Molly Lynch: It is. People with intellectual and developmental disabilities can have a range of literacy. You may have somebody who is nonverbal, but they can read at a fairly high level.

We really honed in on this group with extreme low literacy who may not be able to access typical public health communication.

Helen Osborne: For either one of you, can you share a story or make this real? Give us an example of someone who will fall within your intended audience.

Molly Lynch: We can talk a little bit about the personas that we developed. Linda, do you want to talk a little bit about what a persona is and why we developed them?

Linda Squiers: Sure. Personas are ways to represent the audience we’re trying to reach. We create them, and we usually create several of them for a project to make sure we’re keeping the audience at the forefront of our development efforts.

We created about five different personas to represent this audience, and I’ll read you one of them.

Helen Osborne: Great.

Linda Squiers: We have Alice, and Alice is a 23-year-old woman with autism who lives with her parents, her brother and her two cats. She works part time at a bakery and volunteers at her local animal shelter.

Alice can read books, but sometimes has trouble remembering what she has read. Interactive products help her remember information and apply it to her own life.

Helen Osborne: Wow. That makes it so clear. It might describe your audience as you’re developing materials, but it’s clear to me and I hope it’s clear to our listeners, too.

Is Alice a composite you made up? Or is Alice a specific individual you’re working with?

Linda Squiers: No, she was not a specific individual. We did a lot of formative research and collected information and interviewed people with intellectual and developmental disabilities and extreme low literacy. We did create composite personas based on those that we had interacted with.

Helen Osborne: Thank you. It sounds like Alice, as you’re describing, probably falls within the purview of the intellectual developmental disabilities, but she is able to read at some level. Do you have a persona of someone who is really challenged when it comes to reading?

Linda Squiers: Yes. I have Izzy. Izzy is a 52-year-old woman with Down syndrome. She lives with her sister and works at a grocery store. Izzy loves hanging out with her friends and competing in track and field on her Special Olympics team.

Izzy can read basic books with pictures, but she’d rather watch videos. Reading is slow and she often gets frustrated when there’s a word she doesn’t know.

Helen Osborne: Thank you. Boy, those are very helpful. You have the image of the audience you want to create information for, and the CDC and other people you were in touch with saying, “We have a pandemic here. We have information people need to know.” How did you go about creating appropriate materials for that audience?

Molly Lynch: I can jump in there and talk a little bit about it.

Helen Osborne: Please do, Molly.

Molly Lynch: I think the first thing to note is that Linda and I have worked together for many years in plain language research and health literacy work.

When we started on this project, this particular audience was not an audience that we had had a lot of experience with or had done a tremendous amount of research for. So we wanted to make sure that we had a really robust approach to this and we were really keeping our end users, our audience, at the center of our approach.

We started broad with a literature review and environmental scan, and we thought, “There must be best practices out there. Maybe they need some tweaking for this particular context.”

But when we looked at the literature and we scanned the web across organizations, we really didn’t find a cohesive set of best practices for developing products.

Then we wanted to talk to people, which is what we love to do. We began with the interviews with those key disability-serving organizations or partner organizations who had kind of raised the flag that there weren’t best practices available.

From there, we began to talk to actual families. We started with interviews of caregivers, parents, sisters and brothers of people with an intellectual and developmental disability who also have extreme low literacy. We learned a tremendous amount from that, and we began to develop some materials.

Then we took those materials directly to people who do have an intellectual and developmental disability.

Often, they had their caregiver there as their support person to participate in an interview, but we really talked to them. We showed them the materials and we said, “What works best?” That’s how we refined our materials and got to our end products.

We have a suite of resources on the CDC website that really covered many of the protective behaviors that we needed to do for Covid during that time.

Helen Osborne: Thanks. Can you describe one of the materials that you created?

Molly Lynch: Absolutely. I think one of them that would be helpful to describe is right when the Covid vaccine came out, it was really important to let people know what would happen when they went and got a vaccine, what they needed to do.

We created a social story. A social story is a tool that’s been around for a long time, and during our research, our environmental scan, we found that social stories worked really well for this audience.

They put the intended behavior into a narrative, and it helps people know what to expect when they go to do something, such as get a vaccine.

The social story begins with a character. In fact, it’s Izzy who Linda introduced earlier, one of our personas, that we made into a character in the social story.

Izzy goes with her mother to a pharmacy and gets a Covid vaccine. It goes through what happens. You might feel a little sore in your arm, you might feel a little tired, but at the end, you are ready to go back out into the world and interact with people and hang out with your friends.

That’s an example of one of the materials we developed.

Helen Osborne: How does this differ from plain language for what you did?

Linda Squiers: There are a lot of plain language principles that are relevant, but they don’t necessarily apply for this particular audience. These principles are really distinct from the plain language materials.

For example, we’ve got some basic best practices. A material should focus on a single behavioral recommendation. You wouldn’t put multiple behavioral recommendations in a material for someone with intellectual and developmental disabilities and extreme low literacy.

Helen Osborne: When you say that, you’re not talking about, “Get the shot, wear a mask and stay six feet away from the next person.”

Linda Squiers: Exactly. Each of those would have a separate material. There would be a material for, “Get your shot,” and a material for, “Wash your hands.”

Helen Osborne: That’s what your audience told you that works, when you just do it for Izzy, Alice or somebody else. Focus on one story with one behavior in it.

Linda Squiers: Yes. Another principle is cutting anything that’s not essential. If you’re really focused on that behavior, then that’s the information that you’d include in the particular material.

Molly Lynch: Linda, can I add a story about that one? I thought that was really interesting.

Covid is an example that is something new. It’s something where it’s sort of complex to understand where Covid came from and why it’s here.

When we talked to families, they really told us, “That information is not important or essential when you’re starting to talk about going to get a vaccine. What the person in my family needs to know is how to go get the vaccine and what’s going to happen, not the global context about what’s happening with Covid right now.”

That was really helpful insight from the families themselves.

Helen Osborne: That is. Also, I notice you use the word “vaccine.” Was that a conscious decision to use that rather than shot, vaccination, or immunization? How did you come up with your word choice for that?

Molly Lynch: I’m using the word vaccine now, but we actually tested that material with our audience and we decided that, in working closely with them, shot was actually the better word.

This is an interesting, I would say, conversation with CDC who would much prefer to use accurate medical terminology, but we really advocated based on what we heard that everyday words like shot were going to be much more understandable.

The other thing that we learned when talking with families is making sure that if we pick a word, we stick with that word. We don’t use vaccine on one page and shot on another page. We really use the same word for the same concept.

Helen Osborne: You learned from your intended audience, the people receiving this message, their family and their caregivers. Those must have been amazing conversations that you had.

What was the pushback from a great big public health organization like the CDC? Did they say, “We want our medical stuff,” or were they listening to what you learned from your audience?

The reason I’m asking this is I’ve had a situation when I did plain language writing, too. The scientists, the experts, the subject matter experts were saying, “Wait, you’re making it too simple. We need to say this and this, and say it this way.” But our audience couldn’t understand.

Did you have any pushback? And if so, how did you deal with that?

Linda Squiers: The CDC was a great organization to work with on this project and they were very much wanting to focus on the needs of this audience.

I think the push is that we developed materials that the audience said were most useful to them, so there are videos. There are interactive handouts that someone can use to put steps in order for a particular behavior. There are posters because they said those would be useful.

I think CDC is trying to make sure that they get information on the web, but the web isn’t always the way that people with intellectual and developmental disabilities are looking for information. They’re much more tactile, so they’re going to need a caregiver to help connect them to information that’s posted on the web.

I think it’s being able to recognize that the caregiver is really vital to helping people with intellectual and developmental disabilities access information that’s put up on the web, that there’s someone in the middle that’s going to have to help connect them to that kind of information that’s on the web.

Helen Osborne: There are many things I so much like about your project. One is you’re really doing it to communicate directly with the person who needs this information. You’re not just saying, “Everybody has a caregiver or someone at home who can help. Let’s communicate to them and they can figure it out.” You’re really respecting the individual in your audience.

I worked in psychiatry for many years as an occupational therapist. I know when you come to issues of cognition, mental health and developmental disabilities, it’s like you said at the beginning—it’s not a one-size-fits-all kind of an audience.

We can all be at that spot for different reasons and different times, whether it’s a limitation acquired at birth developmentally, an accident, an illness or something due to age. There are all kinds of reasons that can affect our cognition as we get information in and communicate it out.

That’s one reason why I was really wowed by the importance of this project.

You developed this tool. I’m sure listeners now are intrigued and I wouldn’t be surprised if people are saying, “What can I do? How can I learn more?”

Linda Squiers: The tool is a set of 27 items. It’s found on the CDC website. If you Google “product development tool CDC,” it should pop right up.

Helen Osborne: It’s also going to be on your Health Literacy Out Loud web page. For those of you who are just listening to our podcast, there are several places you can go to get this fantastic tool.

Linda Squiers: Thank you. It is really meant for people who are in a position where they might want to be creating materials for this audience. It’s a struggle to be able to find these best practices.

We have tested these best practices, so it is an evidence-based tool to help organizations or others create materials for this audience.

It has some really practical guidelines. I started telling you about a couple of them, like focusing on a single behavioral recommendation.

Also, if you’re developing something that’s got screens, it’s presenting only one idea or behavioral step on a particular screen and not putting multiple steps on a single screen or page.

We can run through more of these if you’d like.

Helen Osborne: I think rather than covering all this just with our spoken word now, I think that seeing this is so worthwhile.

Something else I really took from this is that you had side-by-side examples of what works and what doesn’t work as well, as far as the recommendations and communicating it in a simple but informative, respectful way. I think your examples are terrific.

You also have a score sheet that accompanies this. I know CDC has other score sheets for doing the Clear Communication Index, but that doesn’t quite cover this population. That score sheet is comparable. It builds in your recommendations. Is that correct?

Molly Lynch: Similar to the Clear Communication Index, which provides kind of a guide for more traditional plain language best practices, we wanted to do it in a similar way to make sure that applying these items was objective and that you could receive a score on your material and you could know, “Am I quite getting there? Am I quite covering all of these, or are there some places I need to go back and make some revisions to the materials?”

Helen Osborne: I’m thinking, as someone who does plain language writing and editing, I could use that score sheet to help make my case about why this is needed, and to deali with any pushback that I might be getting from somebody, from a subject matter expert, saying, “Wait, you didn’t include this. You didn’t say it that way.”

I think it’ll help further that case, saying, “This is evidence-based. This is tested. This is what the recipients of the message and their loved ones/caregivers also need to know.” You’re moving it forward in a great way.

I also see that you wrote a research paper, “Building Evidence for Principles.” Can you tell us more about this?

Linda Squiers: Sure. We wanted to make sure that all of the items that were included on this product development tool really did work, that applying the principle would be more effective than not applying the principle.

We did do a survey with caregivers and we showed them a material that applied a principle and a material that didn’t apply the principle, and asked them to respond to a series of questions kind of rating and ranking the materials.

We know that all of the principles that are on the tool really do demonstrate effectiveness in helping someone with an intellectual or developmental disability understand the content.

Molly Lynch: I’ll say that CDC was really supportive of having evidence for this tool, and so we were able to have a larger sample than in some of our interviews we did in the initial phase.

We wanted to have enough numbers to show that there was really statistical difference between applying a principle and not applying a principle, and really building that evidence base.

Helen Osborne: That’s what health literacy is all about. This project, not only the outcome, but the process itself sounds like a wonderful example of building in research, evidence, practice and assessment.

Because it’s from the CDC, this tool is readily available for free for anybody around the world. Correct?

Molly Lynch: Yes, absolutely.

Linda Squiers: If you have a set of materials already and you had developed them for people with intellectual and developmental disabilities, you could actually apply the score sheet to existing materials and you could identify places that the material could be improved.

You could also use the tool to help guide your development of a material. It could be used in several ways.

Helen Osborne: Thank you. You can also be using it to teach new staff to do this, too.

Linda Squiers: Yes.

Helen Osborne: I love this project. I’m so glad that you brought it to my attention, and that we together could bring it to everybody’s attention. It truly is health literacy in action. Thank you for being guests on this podcast.

Molly Lynch: Helen, thank you so much for having us today. We are thrilled to be able to talk more about this tool and the work we did.

Linda Squiers: We really appreciate the opportunity.

Helen Osborne: Thank you both. As we just heard from Linda Squiers and Molly Lynch, it’s so important to communicate clearly with everyone. That includes people who have intellectual or developmental disabilities and those who have extremely low levels of literacy. But communicating clearly is not always easy.

For help communicating your message, please take a look at my book, Health Literacy from A to Z. Feel free to also explore my website, www.HealthLiteracy.com, or contact me directly at helen@healthliteracy.com.

New Health Literacy Out Loud interviews come out the first of every month. You can get them all for free by subscribing at www.HealthLiteracyOutLoud.com, or wherever you get your podcasts.

Please help spread the word about Health Literacy Out Loud. Together, let’s tell the whole world why health literacy matters.

Until next time, I’m Helen Osborne.

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