On Call Magazine
September 4, 2007

By Helen Osborne, M.Ed., OTR/L
President of Health Literacy Consulting

Health literacy is a worldwide concern as providers everywhere strive to communicate health information more clearly. The universality of this challenge became more real to me during a recent visit to Indermark, a rural village in northern South Africa.

Indermark is unlike any place I’ve ever been. Outwardly, this village is vastly different from my home in Massachusetts. It was winter, their dry season, and Indermark’s small adobe and tin houses were nearly the same reddish color as the dry, dusty earth. The people of Indermark, who had very dark skin, wore brightly colored clothes. I spent two days among them, along with a local medical sociologist, Retha Gaigher, DPhil. Together, we went with home caregivers on their morning rounds and talked with a traditional healer, a faith healer, an HIV/AIDS counselor, and peer educators about the work they do.

In Indermark, people live with large, extended families. We visited many homes that had 10 or more people including elders, parents, aunts, uncles, cousins, and children of all ages. For the most part, women seemed to be the workers — they carried water and firewood on their heads, did laundry, and tended to children and the sick. The few men I saw appeared idle, but I was told that some work in mines and can only occasionally visit their rural families.

Like many other places in South Africa, Indermark is a place of extreme poverty. The houses that hold so many people might have just two or three rooms. Some have electricity and running water, but most do not. Instead of flush toilets, people use long-drops (outhouses) in their yards.

It’s common to find chickens, goats, cows, or gardens in the yards. The clothes people wear are often threadbare, and there are only a few vehicles. Almost everyone walks long distances to get to the store, or the daycare center, or the clinic.

The primary purpose of my visit was to better understand how people communicate health information. All the health providers I met talked about the current pandemic of HIV/AIDS. Many people have died from this disease or are now sick with it, and an increasing number are being diagnosed with tuberculosis or other diseases that occur because of suppressed immune systems. Everyone I met said promiscuity is a persistent problem and spoke of the urgent need to educate people about safe sex.

Gaigher and I spent a morning with three caregivers from Phela o Phedise Integrated Home Base Care — a nongovernmental organization, or NGO. These people are kind, caring, religious young mothers whose job it is to advise and assist orphans and patients. While they are supposed to earn a modest wage, there has been no funding for the past six months, and so they volunteer. Nonetheless, the caregivers spoke with pride about their work helping others.

On a typical day, they visit 21 orphans and 16 other patients. We saw orphans who have lost parents from HIV/AIDS; we saw child-run households where older siblings are taking care of younger ones; and we saw families whose children have significant physical disabilities. We visited patients with HIV/AIDS, tuberculosis, and bedsores, and we visited the home of an elderly man who was dying.

One family we saw comprised an elderly granny, her adult daughter, and her 5-year-old grandson. Granny has diabetes and appears to be nearly blind. She crawls instead of walks because of foot sores, but she wasn’t the reason for this visit. We were there because the daughter and her son both have HIV/AIDS. The caregivers told me that the mother refuses all antiviral medication and nutritional supplements. While they tried hard to engage her, she sat silently and remained nearly motionless.

The caregivers hoped to educate the mother and her son by giving them copies of an educational flyer about a nutritional supplement. But the mother didn’t respond and her son just looked quizzical. He actually seemed much more interested in the banana we gave him, which he tried to eat, peel and all.

From a health-literacy perspective, the educational flyer left a lot to be desired. There are 11 official languages in South Africa — English, Afrikaans, and various regional tribal languages—and illiteracy is a widespread problem. The pamphlet the workers gave the mother was written in English, which is not her language, and the reading level was extremely high. The content was clearly aimed not at patients, but at health professionals. The caregivers said this is the only teaching tool they have.

As I watched, I saw that these caregivers actually have — and use — a large arsenal of effective communication tools. For instance, they spend a lot of unhurried time with each family, showing support both verbally and nonverbally. The caregivers also perform songs and plays to educate people about health. I recorded them singing one they had written about preventing AIDS and sexually transmitted infections. Now I smile each time I hear it.

On the second day, Gaigher and I met with Amelia Moja Maseko, who is an HIV/AIDS counselor. She sits with people as they are tested for the disease, and if the results are positive, she counsels them about medication and the need for safe sex. Maseko said one of the challenges she often faces is that many people believe they have AIDS because they are cursed or bewitched rather than because of sexual practices. So she has had to find nontraditional ways to get the message across.

When people come for testing, she teaches them about the device that’s used (it’s similar to a home pregnancy test) and how to read results (one or two lines, indicating negative or positive). She sits quietly as people wait for the results and then asks how many lines there are and what do they mean.

Maseko says this approach helps people better accept the diagnosis because they say, “I have AIDS,” rather than, “The counselor told me I have AIDS.”

She also uses visual communication to explain how medication works. First, she draws a circle that represents the body. Then she draws dots that represent damaged cells. Finally, she draws a line that represents the medication effect.

Another approach that Maseko and others are using is to train traditional healers as well as respected community leaders to be HIV/AIDS educators. This way, the community hears a consistent and culturally acceptable message about the disease and its prevention.

I learned a lot from my visit to Indermark. Regardless of where we live and how many resources there are, health communicators face similar challenges. Those challenges include inappropriate and ineffective printed materials, insufficient translations, and cultural differences that get in the way of understanding. But universally, committed providers are overcoming these challenges and finding creative and effective ways of communicating.

To me, that’s what health literacy is all about.

Helen Osborne, MEd, OTR/L, is president of  Health Literacy Consulting. She is the founder of Health Literacy Month, an international observance of the importance of accessible health communication that occurs each October. Helen’s “In Other Words” column appears monthly in On Call.

Editor’s Note — From time to time, On Call publishes personal essays from its readers that offer a personal perspective on what it means to be a healthcare professional. You can submit an essay for consideration by sending an e-mail with the essay attached to jsaling@bostonworks.com. Type “Perspective” in the subject line, and include your name, affiliation, address, and daytime phone number in the body of the email. Essays should be limited to 700 words and may be edited to make them consistent with On Call’s style. Essays published under the heading of “Perspective” are the viewpoint of their authors and do not necessarily reflect the opinion of the editorial staff at On Call or Boston.com.