The Words We Give to Pain

When a young patient blamed himself for a devastating injury, Clare Kelley stepped in to reframe the narrative, showing how health literacy and human-centered communication can directly impact healing.

How a health literacy and child life specialist is rewriting the language of healing

He was 12 years old, autistic, and had burns across most of his chest. The night before, while his family slept, he had been playing with a lighter. He didn't mean to hurt himself. The lighter just dropped.

By the time Clare Kelley met him the next morning at Vanderbilt University Medical Center's inpatient burn unit, he had already absorbed the story he was telling himself: “I got burned because I broke the rules.”

It was a story that needed to be gently, carefully rewritten in order for the young boy to heal externally and internally, says Clare, a child life and health literacy specialist in Nashville.

"You got burned because you dropped the lighter," Clare told him. "Sure, you weren't supposed to play with a lighter, but kids make mistakes all the time, and usually nothing this bad happens. This was an accident, not a sign that you’re a bad kid not a result of who you are."

Her words sound simple. But they are far from that.

For a 12-year-old processing the sensory chaos of burn wounds, wound care, and a hospital stay, compounded by the particular way his autistic brain was experiencing all of it, the words she chose, and the way she listened before speaking, were doing something clinical and critical. They were reshaping the narrative he would carry out of that room.

By helping the child mirror his thoughts, and reframe his self-blame, Clare was bringing to life her dual roles as a child life specialist and at time. She would also add health literacy studies and the title of specialist to her toolkit. In the intersection of those dual roles, Clare describes how she helps turn complex medical and health jargon into clear, human-centered language, supported by accessible design.

Her experience with this child speaks volumes about the work she does in improving patient/clinician communication, which ultimately leads to improved outcomes and overall healthcare.

What Health Literacy Actually Means

Clare is quick to define what health literacy is. Health literacy is not simply about reading level. It’s not about whether a patient is educated or articulate or sharp.

In the field, two forms are recognized. Personal health literacy, how well a patient can access, understand, and act on the health information they receive. And organizational health literacy, how well a healthcare system or provider is actually delivering that information.

“I like that framing,” Clare says, “because the responsibility is on the organization. I don’t know what my patient knows. It’s really our job to make understanding possible for them.”

Perhaps counterintuitively, she notes, research suggests that people with higher general literacy, but low health literacy may actually be at greater risk for poor health outcomes and more likely, in some cases, to have repeat hospitalizations. The hypothesis: educated people may assume they understand medical instructions. Health information, Clare says, is “really its own monster.” The confidence that you’ve understood something is not the same as having understood it, she says.

The Merger of Two Fields

Clare came to this intersection the long way around. She grew up north of Atlanta, one of four sisters. Her father is a pediatric emergency room doctor who quietly pointed her toward child life when she was in college casting about for direction.

Clare volunteered, discovered a vocation, and eventually found herself doing graduate work and clinical child life practice, first at Mass General Hospital for Children, then at Monroe Carell Jr. Children’s Hospital at Vanderbilt, and most recently as a member of the patient education team at Vanderbilt University Medical Center. Unfortunately, like many in the transitioning field of healthcare, she was laid off in early 2025 amid federal budget cuts.

With years of experience years in the thick of it: preparing kids for procedures, explaining new diagnoses, sitting with families during some of the hardest moments of their lives, she learned early that clear communication wasn’t a nicety — it was clinical care.

“Being a patient is a vulnerable and overwhelming experience,” she says. “When a patient doesn’t understand their care, that sense of vulnerability and overwhelm grow even larger. And the anxiety and stress of that can cause health issues of their own.”

That insight eventually drew her toward health literacy as a formal discipline. She earned her Health Literacy Specialist certificate and built a practice grounded in plain language, accessible design, and the conviction that everyone deserves health information they can act on.

The patient education role at Vanderbilt was, she says, a revelation, and by her own account, the happiest chapter of her professional career. She wrote and edited materials spanning hematology/oncology, psychiatry, weight loss surgery, developmental medicine, and LGBTQ health, working with clinicians, designers, and subject matter experts to translate complex medical content into something a real person could read, understand, and use. These days, she continues to do much of this work as a freelancer for several organizations.

The Story That Heals

Back in the room with the 12-year-old, Clare was doing something else alongside the wound care preparation. She was listening to him narrate his own injury, and then carefully, without judgment, offering edits. On the burn unit, there was no such luxury as a slow introduction. New patients arrived having often spent their first night alone, medicated, and disoriented, and by 8 a.m., wound care had already begun. Clare would have perhaps two minutes to introduce herself before the medical team descended.

That two-minute window, letting a child touch a sponge, smell the soap, hold the gauze, was crucial to care.

“Everyone else in the room is moving fast,” Clare says. “My only job is to crouch down, talk slow, take my time with it.”

This, she explains, is where the disciplines she now brings together, child life and health literacy, find their deepest common ground. Child life specialists are trained to understand not just what children know, but how they know it: developmentally, emotionally, through play, through narrative. Health literacy asks a parallel question of the systems around them: are we offering information in a way that is actually accessible to the person in front of us?

For the boy with the burns, both were necessary. The education piece helped - showing him what would happen, explaining each step so the sensory experience didn’t arrive as ambush. But he also needed something else, something that lived in the space between information and understanding. He needed someone to hear his story, reflect it back, and reshape the parts that were harming him as much as the burns were.

“I was not there in a therapy capacity,” Clare says. “But I could repeat his words back to him when they seemed like an appropriate narrative — and that helped him cope.”

But the core message, she says, is simpler than any of those categories.

She is also wary of what is being lost as AI note-taking tools proliferate through clinical encounters. When a provider’s attention is partly directed at a transcription device, who is noticing that the child is curled at the foot of the bed, not making eye contact? Who records the fact that a patient was visibly shaking from anxiety, and makes sure the next provider in the room knows?

“If AI is taking your notes,” she says quietly, “I don’t get to know that the kid was shaking.”

What she brings to this work is something not everyone in the field combines: deep clinical empathy and a writer’s instinct for language. She knows what it feels like to sit across from a frightened child and search for exactly the right words. She also knows that those words need to be backed up by thoughtful structure, visual clarity, and design that meets readers where they are.

“Effective communication goes beyond words,” she says. “I design patient education materials with accessibility in mind — using layout, visuals, and formatting strategies that support readability for a wide range of audiences.”

Now, in the aftermath of her layoff, Clare is building something she hadn’t quite planned, a freelance practice at the intersection of child life, health literacy, and narrative. She is developing a workshop on health literacy principles for child life specialists seeking continuing education credits. She is creating sleep guides for parents for Hatch, the baby alarm clock company. She is co-authoring a psychosocial support book for parents of children newly diagnosed with achondroplasia, the most common form of dwarfism, a resource designed to help families navigate complicated emotions, boundary-setting, and the particular grief and joy of bringing home a child whose life will look different than they had imagined.

Each project is, in a different key, the same song: how do we give people the words they need to understand what is happening to them, and the agency to act on that understanding?

Narrative as Medicine

That question finds perhaps its fullest expression in her upcoming workshop — Using Narrative Video to Promote Health Literacy — developed and presented alongside Narrative Mindworks and Boston University School of Medicine.

On Tuesday, March 24th, from 11am–12pm CDT, Clare will use an animated patient education video to demonstrate how visual storytelling, narrative structure, and health literacy principles can work together. The goal: to make medical information not just understandable, but resonant, something a patient can hold onto and act on long after they’ve left the exam room.

The workshop is designed for anyone working in patient care, regardless of role. Whether you’re a nurse, a health educator, a social worker, or an administrator, Clare’s approach offers practical strategies you can bring back to your practice.

Learn more about the event: https://lnkd.in/eGNJqi-Q.

The Narrative Mindworks Questionnaire

1. What is your idea of perfect happiness? Sitting in the grass, with my dog, without my phone.

2. Which living person do you most admire? At this moment, the people of Minneapolis and St. Paul.

3. What do you consider your greatest achievement? Becoming a certified child life specialist and getting to support patients and families in that role.

4. What are you most grateful for? My family! Especially my 3 wild nieces and sweet newborn nephew.

5. What’s next on your bucket list? This summer, my partner and I are hiking the Ozarks in Arizona! I’m looking forward to mountain views and hot springs.