By Clare Kelley, MS, HLS, CCLS, Plain Health with Clare
In this edition of Health Literacy Voices, certified child life specialist Clare Kelley shares how meeting patients where they are, even the youngest ones, can turn confusion into confidence and transform health care communication.
Can You Share a Time When Health Information Was Clear—or Confusing—for You or Someone Close to You?
As a child life specialist, sharing and clarifying health information with kids was a big part of my job. I once met a 7-year-old patient who had just been diagnosed with acute lymphocytic leukemia. When the doctor arrived in his room, this new patient abandoned his racecars and listened intently to the doctor from his mom’s lap. As the doctor explained that the patient would need a port placed in his chest for treatment, the patient began to cry. He had heard of ports. Ports were spots where computers were plugged in! Was he going to be plugged into a computer until his cancer went away? I told him I completely understood why he would think that, and explained to him what a port-a-cath looked like and what it did. We talked about how it was different from a computer port and how it would “plug in” to his chemo bags in a way, but always be unplugged after he got the medicine he needed. I showed him a model port and he asked many questions. By the time he left the clinic, he wanted to take the model port home with him to show his siblings.
Patients can be empowered by their ability to move from confusion to clarity.
My takeaway from this and several interactions like it is this: Health information will sometimes be unclear at first, even if only for a moment—and that’s okay! It’s full of unfamiliar words and complex systems. That’s the nature of it. But patients can be empowered by their ability to move from confusion to clarity.
What Can Professionals Learn About the Risks When Health Information Isn’t Clear?
In the health literacy world, we talk a lot about the physical risks that confusing health communication can bring. In my experience working with patients, I’ve found there are psychological and emotional risks as well. Being a patient is a vulnerable and overwhelming experience—the stakes are high, the pain can be intense, and there is a lot of information thrown at you. When a patient doesn’t understand their care, that sense of vulnerability and overwhelm grows even larger. And the anxiety and stress of that can cause health issues of their own! Clear health information supports a patient’s mental and physical health.
What Qualities Do You Notice in People Who Explain Health Information Well?
They ask questions and listen first to gauge understanding.
They speak plainly, but they don’t talk down.
They’re not afraid to sound casual.
What Advice Would You Give Professionals About Sharing Health Information More Clearly or Respectfully?
To professionals who work with pediatric patients, I want to emphasize the value of patient education for children, even very young children. Patients as young as 2 years old are capable of understanding simple things about their bodies, diagnoses, and treatments. And they benefit from being talked to about these things! They deserve to know what’s happening and take part in their care to whatever extent they are able. This can be as simple as preparing a toddler for a vaccine by telling them that they are going to feel a cold wet wipe, a quick poke, and then get to pick a bandage. The best way to make sure that your pediatric patients get the health information they need at a developmentally appropriate level is to consult a certified child life specialist or a health literacy specialist with a background in pediatrics.
What Gives You Hope That Communication in Health Care and Public Health Can Get Better?
Clear health communication has never been more important. Right now, high-ranking public officials are spreading and amplifying grave health misinformation. Public health initiatives are losing funding left and right. And our collective digital literacy skills have not caught up with the AI-powered web—we are vulnerable to all sorts of fake news and hallucinations. It’s easy to feel discouraged. But I do have hope. At the end of the day, health communication is about truth-telling, and truth always comes to light. I don’t think it will be too long before there is a huge push for more clear health communication. We need it to save lives.
After starting my health literacy career in the hospital setting, I recently launched my own health literacy and patient education business. And what I’ve learned from talking to clients and colleagues is that there are so many amazing, passionate professionals working on vital health literacy initiatives. They give me hope: the people who in the bleakest times are not faltering, but pushing harder to make sure people everywhere are well informed about their health.
About the Author
Clare Kelley, MS, HLS, CCLS, is a certified child life specialist and health literacy specialist with a background in patient education, plain language writing and accessible content design. She runs a health literacy practice, Plain Health with Clare, where she creates engaging, audience-centered resources that help make complex health information easier to understand. She also serves as the chair of the U.S. Health Literacy Association’s marketing and communications task force.
Join the Conversation
Has a moment of confusion ever turned into clarity for you or a patient? Share your story in the comments below.