Key takeaways:

• A weeklong culinary camp teaches children with CKD how to prepare kidney-friendly dishes.
• Local partnerships and having a “champion” in your institution can help to maintain a community program.

To help children with chronic kidney disease better understand diet and nutrition, one pediatric nephrology center has created a free culinary camp to capitalize on kids’ love for food.

Children’s Hospital of Philadelphia’s “CHOP it up!” culinary camp, launched in 2015, invites children with any stage of CKD to create and enjoy kidney-friendly meals with guidance from a professional chef. The weeklong camp culminates with a team-based cooking competition, where participants make their own unique dishes with limited ingredients. At the end, camp participants take home a recipe book and leftover food and ingredients to share with their families.

Source: Sandra Amaral, MD, MHS

Healio spoke with Sandra Amaral, MD, MHS, medical director of the pediatric transplant program at Children’s Hospital of Philadelphia (CHOP), about what it takes to run the program 10 years since its inception and how the camp experience has influenced her clinical practice.

Healio: What inspired you to start this culinary camp?

Amaral: Shortly after I began working at CHOP, I was thinking about different ways to engage with the kids at our hospital. We’re located in Philadelphia, and we have a lot of inner-city kids who are on dialysis. As I walked through our dialysis unit, I saw these kids were drinking cola and eating cheeseburgers and french fries — there was actually a McDonald’s in the hospital at the time. These are foods that are very high in phosphorus, salt and potassium and patients should limit these when they are on dialysis.

One day, I invited Edward Drake II, the founder of an organization called “YNOTT?” (Youth Needing Organ & Tissue Transplants), to speak to the kids at our unit about his experiences with end-stage kidney disease. As part of his icebreaker, he asked the kids what they wanted to do when they grew up. About 75% of them said they wanted to be chefs. This was around the time cooking competition shows on TV started to gain in popularity. So, I told my research coordinator that we should figure out a way to empower kids to eat better and give them an experience that aligns with their interests in becoming chefs. After connecting with a local cooking school, we were able to begin our program at a low cost.

Healio: Could you take us through a day of culinary camp? What is the experience like for children in the program?

Amaral: We host the camp at the Philadelphia Public Library, which has a culinary learning center on the top floor. Each morning, the kids will split up into groups, get their recipes for the day and work with our chef who supervises them through the process. One person will work on an entrée, someone will work on the side dish, and another person will make dessert, depending on how many kids are attending. They work pretty independently, and afterward we eat lunch together as a group to discuss what went well and what needs improvement.

Then in the afternoon, we do various fun group activities, which is what makes hosting the camp at our local library beneficial. The Philadelphia Public Library has a music department and a science department that allow us to offer unique sessions each year, such as a lesson on composting or a lesson on playing different instruments. We usually do meditation or yoga each year, or I’ll host a Jeopardy-style game for one day of camp. We try to mix it up each year.

On the last day of camp, we host a cooking competition where the kids team up to make a meal using two or three secret ingredients. After just a few hours of preparation, we have judges — which include library staff and our CHOP team members — grade them based on presentation, taste and creativity. The kids love it, and at the end we give out awards. I’m always amazed by the dishes they create, and it really builds their confidence.

Healio: You also introduced patient-caregiver workshops through your program. What do you teach in these workshops?

Amaral: After the first few years, we realized that although it’s great to get the kids excited about cooking, they’re not often the ones purchasing food or cooking at home. So, we started hosting workshops, one in the fall and one in the spring, for children and their caregivers to cook meals together. Each workshop is about four to eight families, and everyone gets together to share our dishes at the end.

These workshops have been a nice opportunity for caregivers to connect as well. Some parents don’t know other families who are going through the experience of raising a child with kidney disease, but they can connect at these workshops and learn from each other about, for example, getting ready for dialysis or transplantation.

Healio: Are there any specific dishes or lessons you revisit each year of camp?

Amaral: Usually we have a different theme each day, such as a breakfast day or a “comfort food” day. A lot of our lessons focus on how to substitute ingredients for healthier alternatives. For example, potatoes are high in potassium, but double boiling them can help reduce potassium. We also talk about flavoring dishes with spices instead of salt and ways to incorporate more plant-based meals into patients’ diets. And for desserts, we make cookies with a cream cheese frosting that’s a bit healthier, and that’s usually very popular among participants. We try to change it up every year and accommodate patients’ individual needs.

Healio: How can camp participants take home these experiences and apply them to their daily lives?

Amaral: These experiences give kids confidence. We talk with them about how sometimes a recipe doesn’t come out right the first time, and that’s OK. We encourage them to remember what they did and change things up the next time they prepare a recipe. We also hear that a lot of the kids cook at home, and that’s really the goal. Even if they’re not cooking renal-specific dishes, just cooking on your own at home is healthier than getting takeout food.

Healio: From your perspective, how has coordinating these camp experiences transformed your work as a physician?

Amaral: As a physician, it opens my eyes to some of the struggles that our patients face. Sometimes, working outside of clinic with the kids who have developmental delays or genetic disorders, I really get a sense of their strengths and limitations and how they are accommodating their lifestyle, like when they have to go to the fridge to get different medications with meals.

That makes me a better clinician because it reminds me to ask questions in practice. If there’s something I see in their labs that I think might be improved by dietary changes, I might be more open to starting those discussions. I’m especially mindful when referring my patients to our renal dietitians. I’ll ask them if we can make adjustments that still allow patients to have their favorite food. For children especially, eating is so integral to their growth and development, it’s important to optimize and frame diet in a way that can help them thrive within their environment.

Healio: What would you like clinicians to know about what it takes to run a program like this?

Amaral: You really need a champion and team. I’m lucky to have my research program manager, our staff volunteers and partnerships with our community that have helped us do this for a long time.

Funding is always a challenge. We’ve been fortunate since we received grant funding that our institution has set aside for community partnerships. However, a lot of children’s hospitals are constrained financially with issues related to Medicare reimbursement and access to care that threaten to make the pot smaller. Programs like mine might go away, so we have to reapply every year for funding and provide a progress report to demonstrate the value of our program.

That said, we’ve also been fortunate to receive more funding over time, which has allowed us to expand this program. The patient and caregiver workshops are part of that, and we’ve also been able to support our children who struggle with food insecurity or provide reimbursement for transportation so families can attend our programs.

So, I would say for a physician or team getting started on a program like this, don’t get discouraged. Some years may not be well attended, while the next year could bring the best attendance yet. Even if you only have a few children to attend, we can make a difference in their lives, and that’s still a big deal.

For more information:

Sandra Amaral, MD, MHS, can be reached at amarals@chop.edu.