image7-copy_EDIT

STEM activities provide hope for kids on dialysis

Most kids don’t want to spend four hours in a hospital chair, three to five times a week, but for many young Americans with chronic kidney disease (CKD), routine dialysis is a huge part of their lives.

Marcus* is a 16 year-old CKD patient at Children’s Hospital Colorado. He’ll tell you that dialysis makes him feel sleepy and sick. Sure, he can do homework, watch a movie, nap, or play computer games, but none of these distractions go very far. You can tell when he is not feeling well. But when you can engage him in something, it will at least take his mind off the discomfort.

Today, he’s already been in his dialysis chair for four hours when a friendly nurse comes over. She’s apologetic, and explains that because of his numbers, he will have to stay an extra hour. Freedom will have to wait.

As the nurse moves on to the next patient, Marcus keeps a straight face. But then, he turns to the volunteer sitting with him, pumps his fist, and whispers, “YES!”

How is that some visits to the dialysis center have become a treat instead of a chore? The dialysis center at Children’s Hospital Colorado is different because of culture, and there’s so much we can learn from these bright kids, caring staff, and dedicated volunteers.

Jaime Bailey, ready to volunteer at Children’s Hospital Colorado.

Meet Jaime Bailey

The volunteer sitting next to Marcus that day is named Jaime Bailey. Since 2017, she has shown up at the hospital multiple times each week to engage and interact with young CKD patients. Her background is in education, and she brings unique STEM (science, technology, engineering, and math) activities to pass the time with the kids.

Any nurse at Children’s Hospital Colorado will tell you that “distraction is the name of the game,” but Jaime brings a little something extra into the mix. After dozens of kids and hundreds of hours, it’s become clear that a positive dialysis experience isn’t just about entertainment, but mental and social engagement.

“A positive dialysis experience isn’t just about entertainment, but mental and social engagement.”

On that day, Jaime and Marcus were working together on a computer programming activity, creating a simple game on one of the Chromebook laptops available to the CKD patients. At that point, the programming was getting a little above Jaime’s head, but Marcus was loving it. He had a challenge, a mission, and a project to work on with a friend.

Transforming dialysis center culture

Culture change is by no means instantaneous, but with a little patience and intentional modeling, the new normal will catch on.

“When I first come in to do activities with a new group, I have to identify the early adopters, the kids who are most willing to engage and play,” explains Jaime. “Everyone will be watching that first kid to see ‘are they having fun? Do I want to do that too? Do I want to be part of that relationship?’”

It’s easy to see why so many kids wanted to jump into Jaime’s STEM activities, and the resulting culture of fun and curiosity at Children’s Hospital Colorado is remarkable. Together, the young patients would experience science through fun activities centered around chemical reactions, electric circuits, gardening, 3D printing, baking, anatomy, nutrition, and so much more.

The importance of staff support

Jaime is quick to emphasize that a supportive staff is pivotal to culture change. “Whenever there was a new patient, the nurses would introduce me and give background information about the kid’s likes and interests — that gave us a simple but critical foundation for trust and a relationship.”

Some kids liked hands-on activities, others liked computers. Some liked one-on-one attention, while others thrived on a little social “coopertition” (cooperative competition). Some kids, Jaime says, were only interested in activities if they were messy! Gloopy chemical reactions like “elephant toothpaste” were often a crowd-pleaser. One particular five-year-old even dubbed her “Messy Jaime.”

An empowered staff recognizes that creating a positive culture isn’t just about the patients; it helps everybody. There’s no doubt that on STEM days, a were better attitudes, less complaining, more cooperation, and a better experience for everyone.

“I would tactically place the activity supplies for the day at the nurses’ station so the kids would see when they walked through the door. Their demeanor would change instantly,” explains Jaime. “The kids would stand taller and be curious about what we were going to do that day. Nurses would use that energy to get kids focused and take vitals and put them on the machines — You can’t do the STEM activity until you are on.”

“Nurses would use that energy to get kids focused and take vitals and put them on the machines.”

Four hours can seem like an eternity for a young kid, but this clinic is living proof that “time flies when you’re having fun.” Quite often, Jaime’s young friends would be surprised to hear that their treatments were finished, or almost done.

Simple steps towards transforming culture in your clinic

Patient engagement isn’t just for kids, and if you want to see culture change in your dialysis clinic, you don’t have to resort to chemistry and marshmallow canons (although really, why not?).

Especially as the majority of CKD patients are advanced in age, mental and social engagement are a key part of maintaining brain plasticity and combating dementia.

Whatever you do, Jaime offers several simple practices you can implement right away with CKD patients of all ages…

  1. Engage patients right away: by the time Jaime’s kids turned to TV or video games, it was usually too late. The remainder of their session would be lethargic, uncomfortable, and unproductive. Adults are similar. Welcome them in and start up a conversation right away. Introduce them to other patients and help encourage real mental/social engagement before they turn to their TV or smartphone.
  2. Give patients control: even though the kids weren’t in control of their treatment, they had a say in their choice of activities. Adults too will have a much better experience when they’re given options. Control means comfort. Ask questions when something isn’t working. Have the flexibility to innovate and change. Work towards engaging patients in full in-center self-care dialysis.
  3. Inform the patients: Knowledge is power, and that power provides control, comfort, and confidence. Regardless of age, nobody likes to be kept in the dark. Start by turning the dialysis machines towards your patients and teach them what’s going on and what different numbers mean.
  4. Follow patient likes and interests: You can only engage once you have context. For Jaime’s kids, this meant understanding their interests and aptitudes. When you’re engaging adults, find the patients who are technically minded; they might want to know how the machine works. Find the ones who are methodical; they might like to know about their numbers so they can keep track of their own progress. Find your connections. Listen to stories.

Empowered clinics see empowered results

At the end of the day a learning culture creates community. Relationships cannot be forced, but clinics can set themselves up for success by fostering culture around learning. When patients learn from staff then help teach each other, they begin to form bonds of trust and cooperation.

“A learning culture creates community… When patients learn from staff then help teach each other, they begin to form bonds of trust and cooperation.”

Kidney care culture change isn’t just a nice idea, it translates into real-world improvement. Empowered clinics see reduced costs, reduced staff burnout and turnover, and improved results. In recent years, empowered clinics under EKC Founder Dr. Gibney have seen mortality and hospitalizations reduced by an incredible average of 50%.

If you’d like to learn more about transforming your kidney care program, don’t hesitate to contact us. We’re here to help you develop and execute strategies for empowerment. You can even work directly with Jaime Bailey to learn how your clinic can start a STEM program of its own or implement other ways to engage kids and adults alike.

An incredible experience for a young CKD patient

Marcus, the young man from the beginning of this story, went on to receive a kidney and liver transplant, and continues to stay in touch with Jaime today. She describes one particularly memorable moment after his transplant when, believe it or not, he couldn’t wait to get back to the dialysis clinic.

“He was on the 8th floor, and we went down to the 4th floor… and the gal who was walking with him with the support belt and the IV pole was like ‘oh my gosh!’ He was just so excited to go back to the kidney center and share with the other kids there.”

Marcus’ experience was trying on so many levels, but in the end, he was left not with an overwhelming desire to put a negative past behind him, but with a lasting gratitude for the relationships he made. His experience was shaped by community with fellow patients, nurses, and volunteers.

Jaime has many remarkable stories from young patients like Marcus, but none of them more unique than those waiting to be written with thousands of dialysis patients around the country. We hope these stories have been encouraging to you, and by all means please contact us to learn more about creating your own culture of empowered kidney care.

*Actual names have been changed to protect patient privacy

Empowered Kidney Care

The Empowered Kidney Care staff is made up of doctors, nurses, educators, and change-makers all dedicated to revolutionizing the kidney care experience in America.