Nutrition therapy is essential for the successful management of Type 1 and Type 2 diabetes, and registered dietitians are undoubtedly a critical member of the healthcare team. But beyond the education provided, dietitians have an opportunity to play an even more supportive role in client care. The challenges that patients and their families experience while navigating life with diabetes extends far beyond the surface. For many families, feelings of fear, guilt, and overwhelm can be isolating.
Learning to compassionately engage with children and teens with diabetes, as well as their families is the first step to becoming a more supportive healthcare provider.
As a parent of a child with Type 1 diabetes and Certified Diabetes Educator (now Certified Diabetes Care and Education Specialist), dietitian Kylee Pedrosa has been on both sides of diabetes care. Today Kylee is sharing how her experiences as a “DM1 mom” have impacted her counseling approach and led to the development of her unique diabetes training program designed for fellow dietitians to learn how to support Type 1 diabetes families.
Learning About a Type 1 Diabetes Diagnosis
What was your experience managing nutrition for a child with diabetes?
My daughter was diagnosed with type 1 diabetes when she was two years old. She was immediately admitted to the PICU in diabetic ketoacidosis (DKA). While the doctors worked to stabilize her in the hospital, my husband and I learned how to inject insulin, check blood sugar levels, and basically how to become our child’s pancreas. The dietitian from the hospital educated us on a diabetic diet and provided a meal plan with carb choices. For breakfast, she could have two carb choices and lunch and dinner she could have three carb choices for each meal.
The reality is a toddler is not going to have exactly thirty grams or forty-five grams of carbohydrate at a meal. They play with their food, drop half the grapes on the floor, or throw their cup of milk across the room. It’s nearly impossible to tell a small child, or any age child or teen, “Here…you can have two carbohydrate servings no more, no less.” When it comes to managing diet and nutrition for a child with diabetes, it’s not so black and white.
As healthcare providers, we have the opportunity to explain the nutritional management of diabetes in a way that makes sense for parents and for children at each stage of development. Through a patient-centered approach to diabetes care, we can better understand their challenges, concerns, and goals and develop strategies for carbohydrate counting, meal planning, insulin timing, etc. that best fits with their lifestyle. By setting realistic treatment expectations we can help those living with diabetes reach glycemic targets and improve their quality of life.
What aspect of nutritional support did you find lacking as a DM1 mom?
After my daughter’s diagnosis, I had to learn what things she could eat and drink. I was terrified to give her juice or milk or any snacks with more than 15 grams of carbohydrates. We’re told certain foods or drinks are bad because they contain carbohydrates. What I needed to hear, and what all parents of kids with T1D need to hear from their health care providers, is to feed them as you would any child, with or without diabetes. Count the carbs as best as you can and it’s not always going to be perfect. Dietitians have the opportunity to help when h parents are struggling and to provide support without judgment.
What do diabetes families need that is missing from healthcare?
As a diabetes parent, I felt overwhelmed, not supported, and I desperately wanted my child to be treated as more than a number.
There were challenges we faced on a daily basis and didn’t feel like we had support. And I felt a lot of guilt. I mean, mom guilt is real, but mom guilt of taking care of someone and knowing that every decision you make is literally life and death, that takes its toll. To be that person that can say, “I get it, I understand, and what can we do to help you take some of that guilt off?” Dietitians are able to give diabetes families knowledge and support to lessen that feeling of overwhelming guilt.
From a provider-perspective, a client can come in and have an A1C of 9. We need to be mindful to note saying “You’re not doing the right things” and instead address what’s really going on. Find the root cause and talk to that person as an individual — not as a number. A huge aspect for providers to consider is how do you build a relationship with your patients and their families, that will enable you to have those real conversations and build that trust.
Finding a Positive Approach to Diabetes Nutritional Management
How did you begin to step back and let your child manage her diabetes?
DM moms are the ultimate helicopter moms. For me, the idea of giving over control of my daughter’s diabetes management to someone else is really hard. But with my daughter growing older, I knew I had to find a way to help empower her to manage her diabetes independently, and thankfully we found Camp Nejeda. My daughter joined as a camper, and I became involved as a dietitian on staff during the summer.
Programs like Camp Nejeda are so important because they really show the kids and their parents that they are capable. It teaches them independence, where they can feel like they can manage their diabetes on their own. As my daughter gets older, she’ll continue to hopefully be a camper, and eventually even a counselor. The leadership and the responsibilities they learn is something that they’ll take with them their entire lives.
How can wellness providers better discuss diabetes care with children and teens?
For healthcare providers, it’s important to engage and talk directly to the children with diabetes — not just their parents. As they become more aware, you can ask the kids about their own experiences, how they’re dealing with things, and what challenges they feel like they have. Parents have their point of view, but the kids may have a different point of view.
For teenagers especially, peer pressure, bullying, and body image issues may not be things they want to talk about with their parents. They may not want people to know they have diabetes and they may not tell anybody. There may be instances that they may have a low blood sugar but nobody knows what’s going on
We need to let teens with diabetes know how important it is to make others aware. To empower them to be strong and resilient, and then help guide them to be able to say, “I have diabetes, but it’s not gonna stop me from doing what I wanna do — but I’m going to have to take little breaks every now and then and take care of my blood sugar.” We can help them learn that having diabetes is not the end of the world. It sucks, but it’s doable.
Adolescents are trying to define themselves. For any child with diabetes or any other medical condition, it doesn’t define them. To help facilitate this sentiment, healthcare providers need to change the language they use, both with patients and in practice.
I’m not a diabetic, I have diabetes.
I don’t work with diabetics, I work with people with diabetes.
Then, identify those things that make them who they are: they’re an artist, they’re a singer, they’re a football player, they are all these other things, and they just happen to have diabetes.
One of the examples I use to help educate other healthcare providers is to avoid saying “your blood sugar is too high” or “your blood sugar is too low” with patients. Using those words puts a label on numbers, i.e. it’s a good number or a bad number. Instead, you can use “in range” because it’s a neutral phrase. You can say “Oh, you’re out of range, what do we need to do?” and helps patients feel “Okay, I’m not bad because my blood sugar is 300, it is what it is, and now I need to do something to fix it.”
I had this conversation with a client recently, about words we use to describe managing diabetes…we’re battling or we’re fighting are common, but those are all negative, “make things harder” words. So, it’s about changing that context to “I’m going to conquer this,” “take charge,” or “overcome this challenge.”
A Nutrition Counseling Approach Designed for Life with Diabetes
How have your experiences impacted your nutrition practice and counseling style?
In my private practice, I take a whole-body approach…not just focusing on the numbers, but focusing on life and everything that goes into it. I incorporate mindfulness, gratitude mindful eating and intuitive eating, and health at every size… I help my clients to discover what brings them joy and incorporate those things into their life and attain a more positive mindset.
As for my diabetes training program for providers, I am working with two other dietitians who also have both professional and personal experience with type one diabetes We are creating a comprehensive online course for dietitians on how to build relationships and trust with your clients or patients. In addition to type one diabetes management, we are including what we wished providers would know as a parent or patient with T1, as well as, day in the life videos of what it looks like to manage diabetes every day. The goal of the course to help providers view type one diabetes management beyond just the clinical aspects.
What are some resources healthcare professionals can use to better serve diabetes families?
As a complement to our diabetes training program, we also have a Facebook group called Type 1 Diabetes Support & Knowledge for Professionals. In this group, we share tips and tricks we’ve learned, but members can also ask questions about diabetes management. This is also the best place to learn more information about the course.
Additional resources that I recommend for other healthcare providers is a website called Beyond Type 1. This site has so much information on living with diabetes. For more compassionate care, it’s important to understand what the day-to-day life of someone with diabetes is like. You don’t need to have diabetes, but you can go volunteer at a residential camp, or volunteer with the American Diabetes Association or JDRF. Learn from the people you’re impacting, because otherwise, you’re still going to have this outsider view.
How does Healthie enable you to provide real-time support to families with diabetes?
Having access to support in real-time is absolutely critical. In the beginning, I didn’t know who to ask. I had no one to ask. When we first were diagnosed, I couldn’t call my doctor’s office…doctor’s offices tend to be busy and they don’t have time for those small in-between calls. You attend in-office visits every 3-4 months, but there’s a lot that can happen between visits!
In my practice, I use a client-engagement software called Healthie. Instead of relying on a Google search or asking in a Facebook group, clients can get real-time evidence-based support when they are struggling. You can be their resource! Healthie allows me to connect with my clients when they need help — which is part of that relationship building.
My patients with diabetes can share and connect with me in so many ways, including:
- Share/log their blood sugar levels
- Message when they’re having a rough day or if they’re struggling with certain aspects
- Log pictures of their meals when learning how to carb count so I can see what they’re eating and help provide education
- Ask questions or seek support between meetings
Healthie really does allow you to build a trusting relationship with clients while delivering the healthcare support and education they truly need.
Tips for Practicing Compassionate Diabetes Care
I started my practice and my diabetes training program to get better care for anyone with diabetes, to try to include the empathy piece that’s missing. I want healthcare providers to understand what it really is like to live with diabetes day-in and day-out, instead of patients walking away feeling ashamed or bullied for not having the perfect blood sugar or A1C.
When my daughter was first diagnosed I woke up every morning thinking, “How am I going to do this?” Providers can help patients find a balance between managing diabetes and living their life to the fullest while conveying that you understand how difficult it is. You can help them come up with ways to make it easier and be that support that they need, to be that person that they can talk to about their struggles and their challenges.
For healthcare providers that work with patients that have diabetes, I encourage you to take an approach that is mindful and compassionate — it goes a long way in providing support and building a trusting relationship.
- Practice empathy, and acknowledge the feelings of both diabetes patients and their families
- Reinforce with patients that they are a person who has diabetes, but their diabetes does not define them
- Understand the other emotional/external factors that can impact blood sugar levels
- Be accessible to patients and families when they need support, in real-time
- Use neutral phrases regarding blood sugar levels (example: your blood sugar levels are “in range”) to avoid associating blood sugars as “good” or “bad.”
Are you ready to engage with patients and families living with diabetes? Learn more about how Healthie can help nutrition professionals connect with clients in real-time, provide support, and deliver education.
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