Warren Hickson, my colleague in the Worldwide Universities Health Literacy Network, is designing health messages and education modules for young people living with HIV/AIDS in South Africa. He found that most young people who test positive there never start treatment and most who start drop out early or are unable to maintain the 95% compliance required for effective management of HIV. He shares this quote from a young woman named Karen who participated in one of Hickson’s focus groups. She was recently diagnosed HIV positive. This is her translator speaking:
OK, she says , in her experience, she went for the test; she was told that she’s positive, she was asked who was she going to tell about her status and she was told to return the following week to start treatment. So it was all done rush-rush, you know, and she says it’s important that for any HIV positive person, that you as the healthcare worker, you need to walk that road with them, you need to show them that there is hope, that there is a light at the end of the tunnel; that they won’t be sick, that they won’t be wheelchair bound; that they won’t die if they take very good care of their treatment. And she said that was what was missing in her case. No one walked that route with her... no one walked that journey with her.
Improving health literacy is not all about informing or talking or writing or telling or advising or counseling or communicating better. It starts with what Hickson calls “appreciative listening”. Anthropologist/physician Arthur Kleinman urges practitioners to ask questions to grasp a person’s experience of ill health and treatment. Asking directly about patients’ experience reveals their motivations and challenges, their language and logic. It engages them. It shows you how to offer information in ways they will understand and how to assist them in translating information to health promoting action. It give you much richer information than a checklist to complete the record form. It also suggests broader strategies for intervention, message design and professional training. As David Wombledorf, author of The Power of TED* - The Empowerment Dynamic likes to say, “Ask first. Tell second.’