Helen Osborne: 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 amazing people. You will hear what health literacy is, why it matters and ways we all can help improve understanding.

Beyond learning what to do and why to do it, I hope that the people you meet inspire you as they inspire me to make a health literacy difference.

On a recent trip to northern South Africa, I had the privilege of speaking with a community health worker, Selina Maphorogo. She recently retired from the Elim Care Group Project, where she worked with health professionals, volunteers and community leaders to help eradicate the blinding eye disease trachoma.

Selina is recognized for her outstanding community work. In 1996, she received the Community Builder of the Year award, and in 1997, she was a finalist for the Nelson Mandela Award for Health and Human Rights.

I first learned of Selina when reading the book The Community Is My University: A Voice from the Grass Roots on Rural Health and Development, written by Selina along with Dr. Erika Sutter.

Beyond the story itself, I was struck by the many health education strategies they used to teach the community about preventing this infectious disease. To me, this is the essence of what health literacy is all about.

Here is Selina telling the story.

Selina Maphorogo:I am Selina Maphorogo. I am staying in the Limpopo province in Vhembe District. I worked at Elim Hospital, but now I’m retired, in 2003.

Helen Osborne: I know that you did a lot of work helping the health workers and the community in getting rid of trachoma, an eye disease. Is that correct?

Selina Maphorogo: Yes. That was a long procedure. I was not trained to do this work. I learned in the consulting room when I was translating for the ophthalmic doctor, from the patient to the doctor, from the doctor to the patient.

When she was examining the patient, I was seeing it every day. So that is how I have learned. I started to understand about this disease and how it can be prevented.

Helen Osborne: Can you just explain for people who may not know what this disease is? How does it affect people and how can it be prevented?

Selina Maphorogo:This disease is called trachoma. This disease can cause blindness because when you invert the eyelid, you can see the follicles. Those follicles are the sign which shows us . . .

Helen Osborne: That they have trachoma.

Selina Maphorogo:Yes. When you blink, those follicles feel like a foreign body.

Helen Osborne: This causes blindness. This affected many people in your community.

Selina Maphorogo:Yes. When those follicles are scarring, it makes the inner part of the eyelid shut down. Each time you have trachoma, the scarring is making the inner part of the eyelid shut down. If you have it several times . . . Trachoma disease is a family disease. If one person can get it in the family, you find that that person passes it over to the other.

Helen Osborne: To different people.

Selina Maphorogo:Yes. It’s on and off, on and off. If a person does not know how to prevent it, you continue having it until you are old. During the time when you are elderly, the eyelashes turn inwards because inside the eyelid is shut. The eyelashes sit on your cornea and it rubs your cornea when you are blinking. It’s very painful.

Helen Osborne: Very painful.

Selina Maphorogo:That can be corrected only with an operation to make the eyelashes come up again. Once the cornea is damaged, it’s very difficult to make a person see again. It will mean that the doctor will have to make a cornea graft. It’s not easy. Once the cornea is damaged, a person is blind.

Helen Osborne: Thank you for putting all of that in context. You said something and the part I want to hear about is prevention of trachoma. Trachoma is not an issue today the way it used to be, is it? I know you did a lot of work on the prevention. How is this disease prevented and how did you help educate people about it?

Selina Maphorogo:When people were coming to the hospital, we saw a lot of them, many of them, but there were those people who could not manage to reach the hospital. We were only educating these people who were coming to the hospital that they can prevent this disease by personal hygiene.

Helen Osborne: What do you mean by person hygiene to prevent this?

Selina Maphorogo:Personal hygiene, I mean to spare a bit of water to clean your face, to keep your hands clean, not to use your clothes to wipe your eyes and not to use one facecloth for the whole family.

Helen Osborne: Everyone has their own facecloth, wash your hands and don’t use dirty clothes to wash your face or eyes.

Selina Maphorogo:Yes, and have a clean surrounding to chase the flies away. Make a rubbish pit. Put everything which is wet in the rubbish pit. After throwing it, cover it with a little bit of soil so that the flies will not breed.

Helen Osborne: Oh, it’s the flies that cause this in the first place?

Selina Maphorogo:The flies encourage the disease to be worse because it will be sitting on somebody’s eyes and go into another person’s eyes. It makes it worse.

Helen Osborne: That’s how it spreads in a community?

Selina Maphorogo:Yes.

Helen Osborne: We have this very serious disease, but it sounds like very simple ways of preventing it.

Selina Maphorogo:Very simple.

Helen Osborne: Simple and doesn’t cost any money. You just do it. How did you go about teaching people what to do so they are really doing it?

Selina Maphorogo:We have to let the community know us. We have to leave from the hospital to go to the community. We approached the chiefs and explained to them what we found in the hospital, that people are coming and being blind, but we can prevent the disease.

The chief could call the mass meeting so we explain to the people. When we are explaining the disease to the people, they already knew the steps of the disease.

Helen Osborne: They know about the disease, but the fact you were doing the education and going in with the chief who is speaking from the voice of authority, that probably gives you the okay then to do your teaching.

Selina Maphorogo:Yes. We wanted to get permission in order to get to the communities, if the chief understands it and says, “Yes, people must be taught about that,” so it’s having a good background to manage to get to the people.

When he calls the mass meeting, they told us that they know the disease.

For the child, they called it mavoni. This mavoni was good, according to the people. It makes the child peel the eye so the child can see properly.

Isn’t it so that when the child is born, it cannot follow your hand and the child cannot see? When the child is having mavoni, she’s peeling the scars that are in the eyes, so they were happy about it. They were not worried about it. It can heal by itself.

Helen Osborne: If I can just make some comparisons to what we do in the US, I already see a lot of comparisons. You know the problem. You know the solution. You’re bringing in people, you’re educating them and you’re making them feel that it’s okay and here’s the reason to do it. That’s really setting the stage for all that teaching.

You build from what people know. You do it in age-appropriate ways, whether they’re children, adults or older ones.

I know that you’ve taught in certain ways. I want you to talk about this a little bit, about the role of song and drawings. Tell me, because you don’t just write a booklet and give a person a booklet and say, “Go do it.” How do you do it?

Selina Maphorogo:What we did was, when teaching the people, we were doing it practically. We taught them how to invert the eyelid. You tell the person to look down and relax. Then with your two fingers, you hold the eyelashes. With your right hand, you can use a matchstick to put across like this. Then you invert the eyelid.

We practice that. We were seeing in each and everybody’s eyes and they could see trachoma, because it was a time when trachoma was serious in our area.

Helen Osborne: You were also showing them what to do and having them practice.

Selina Maphorogo:Yes.

Helen Osborne: Were you doing this in a group?

Selina Maphorogo:Yes, we were doing it in a group. At first, we were showing them and they wanted to try if they could also invert the eyelid. Sometimes when we’re still young, we’re playing a ghost, inverting our eyelids as children. Some of them could manage to invert the eyelid. Some of them were afraid.

When we showed them at the mass meeting, they could see what trachoma was. Then we asked them if they wanted us to fight this disease. They were very much interested. We told them that we have eye ointment to treat the disease, but the disease can come again because it’s infectious.

When the children are playing together, they can pass it from one another because they touch each other and use whatever they have to . . .

Helen Osborne: Dirty gloves.

Selina Maphorogo:Yes. They said, “Yes, give us the treatment. We’ll treat our families.”

Helen Osborne: You’re dealing with the motivation right there. You’re teaching the strategies and skills. Are there other ways you were doing any of the teaching?

Selina Maphorogo:Yes.

Helen Osborne: We’ve covered a lot of different methods. Tell me.

Selina Maphorogo:We told them that we cannot give them eye ointment for their families only. How about the others? The children will play together and will re-infect it. Then they said, “Give us treatment. We will go and help also our neighbors who are playing with our children.” That is how the Care Group was started.

Helen Osborne: One person really helped another there. It wasn’t just one health worker helping one family.

Selina Maphorogo:No.

Helen Osborne: It was the families.

Selina Maphorogo:One Care Group member was taking care of the people who were next to her, maybe about 10 families.

After coming to learn, we made an agreement. We had to tell them that when we arrive, on our way, we’re coming down, what can we do in order to let you know we’ve already arrived? Then we made the sign of the car hooting. Beep, beep, beep. They say, “Oh, that’s the Care Group. It’s not the vehicle that is selling tomatoes.”

Helen Osborne: You had your own tooting of the horn so they knew you were there.

We only have a few more minutes on this, so I just want to hear if there were other ways you were doing the teaching. I think you did songs, too.

Selina Maphorogo:After every education, the education we gave, we asked them to remain and compose a song. They would compose a song, and taking those health words, put them into the song.

They can use a song when dancing and beating drums. They can use a song when walking around a community telling about the prevention.

Another way was we were asking them to make a role-play. Then they could express themselves that they understood about trachoma, what the cause is, how they can prevent it and what the benefits are after doing all of this. It’s a healthy community.

When we taught them, we used to make practical work of teaching them of how to make facecloths. Our country was very poor. We would ask them to use an old cloth of a towel, to cut the end. The ends are always strong and it can be torn in the middle.

They tore the ends and then they used different colors of wool to decorate the facecloth so that each child can know, “This is my facecloth.”

We went to schools to tell the ones who have started schooling to never take your mother’s facecloth and wash your eyes and face with it. When the mother gives her own facecloth, the child will refuse. Then the mother is bound to make another one is green, another is yellow, according to the number of people in the family. That is one point.

Another thing which we taught about prevention is the rubbish pit, putting all the rubbish in and then covering it, to have clean surroundings, to keep their hands clean and not using their hands to rub their eyes.

Helen Osborne: You communicated this in so many ways. As I’m listening to this, I’m just seeing none of these cost any money. They did take time and they took a lot of caring, but trachoma has really been eradicated in this area. You have this disease no more.

Selina Maphorogo:No. Another thing was storytelling.

Helen Osborne: Tell me about the storytelling. How did that work?

Selina Maphorogo:We made a story of a woman who did not know about preventing trachoma, and showing two families, the one knew and the other did not know. We also prepared the families to accept the Care Group members.

The other family, the Care Group member was visiting and then they were aware of how to prevent trachoma disease. The other one did not know and the other one was having in-turning of eyelashes. Then they started to explain what can be done to educate that other family using the stories.

Helen Osborne: That’s wonderful. Let me just see if I can remember some of these ways. I remember the tooting of the horn so they knew you were coming, the working with each other in a group, the practice of inverting the eyelid and getting the chief involved so that people knew that this message was important. You had people make their own song so they could sing that.

Selina Maphorogo:Putting the health words in their songs and beating drums culturally. They can dance. People will flock and come to the place where music is being played and singing and dancing is going on. Everybody would listen to the song and know what they are saying. When they stopped singing and give health education, then they know. They know exactly how to prevent trachoma disease.

The thing that makes us feel happy is that they did not stop with the Care Group since we started in 1976. They keep on demanding to know more about other health issues.

Helen Osborne: How wonderful. This has grown and it keeps on going. This is the very model of excellent health education.

Selina Maphorogo:They did not only manage to prevent trachoma disease, but they also have prevented xerophthalmia, a disease which is caused by vitamin A deficiency.

When the rubbish pit is full, they have to see in the rubbish pit there is no plastic and no bottle, but all the things which are decaying. Then they plant a pawpaw tree or they make a garden. They can plant carrots or green, leafy vegetables to get their vitamin A. There were many children who were getting blind from measles.

Helen Osborne: Thank you. I just want to say that when I’m talking with you right here, I’ve just had the privilege of seeing your garden. Your garden is one of the most beautiful ones I have ever seen. You are doing what you have been teaching and continuing that.

I want to thank you so much on behalf of the whole rest of the world for sharing with us all your strategies for health education in general and helping prevent trachoma in specific. Thank you so very much, Selina.

Selina Maphorogo:I’m also happy to meet you and I hope we will still communicate to give each other some hints of things. I will also like to learn from you.

Helen Osborne: I’m inspired by Selina and learned so much, too. But I also know that communicating health information clearly and simply can be quite a challenge.

For help communicating your health message, please visit my Health Literacy Consulting website at www.HealthLiteracy.com. While you’re there, feel free to sign up for my monthly e-newsletter, What’s New in Health Literacy Consulting.

New Health Literacy Out Loudpodcasts come out every few weeks. Subscribe for free to hear them all. You can find more information about each episode, along with important links, at the Health Literacy Out Loudwebsite, www.HealthLiteracyOutLoud.com.

I loved listening to Selina’s story and learned so much, too. Did you? If so, tell your colleagues and tell your friends. Together, let’s let the whole world know why health literacy matters.

Until next time, I’m Helen Osborne.

Listen to this podcast.