Many newly diagnosed families are getting CGM’s (continuous glucose monitors) either at the start of diabetes or soon after. There are many benefits to starting CGM early, including access to glucose levels and trends and the ability to share and follow data. They can also allow caregivers to see glucose levels when their child with diabetes is unable to express their symptoms yet. The benefits tend to outweigh the challenges for most people, but we’d like to focus on mitigating some of the common challenges. First, some background on some of the common challenges related to CGMs.
Constant Streaming Glucose Data
As the saying goes, it is both a blessing and a curse to have access to glucose data all the time. The benefits of CGM access are undeniable, and CWD believes wholeheartedly in evidence-based medicine. We also recognize and appreciate the challenges associated with this new onslaught of data. Now that there are CGM devices available for people without diabetes, such people are trying them, and many are quite surprised about what they are seeing. CWD’s own Jeff Hitchcock has been wearing a Dexcom Stelo and has been sending screenshots to our team showing post-pizza spikes in his glucose levels and expressing his own anxieties related to the spikes.
Emotions Related to Glucose Levels
When you live with diabetes, the message you get from your healthcare team, your family members, and society is typically that when your blood sugars are high or low, it must have been something you did, something wrong, which is why your blood sugars aren’t in the “normal” range. But, as mentioned in most of these articles, the number of variables affecting glucose levels is innumerable, making it impossible to be in range all the time – even without diabetes! Therefore, when the CGM is alerting that you are out of range, it can feel like you are failing every time you get an alert or alarm. This can become disheartening and possibly feel like it adds to the burden of diabetes at times. Most often, the benefits outweigh the struggles, but you must consider the individual person living with diabetes.
All The Alarms
All too often, now that most people always have smartphones on their person, we get numb to the constant alerts and stop reacting to them. This is not a new phenomenon but is relatively new in diabetes. As a diabetes educator, I often try to help people relax their target range if they are experiencing alarm fatigue because their targets are set too low and they receive too many alarms. The goal is that the alerts or alarms help the person with diabetes, not add to the burden or cause them to go ignored. I encourage you to talk to your healthcare team about what alert settings are right for you. Alarm fatigue could also happen to caregivers, and checking the settings in sharing apps could also be beneficial.
Conversations Between Caregivers and Youth with Diabetes: Recommendations
The dynamics between caregivers and children or adolescents are ever-changing depending on the stage of development, parenting styles, and a slew of other factors. Adding in diabetes management increases the complexity, but some strategies related to caring for youth with diabetes may also help in other areas of life.
Here are some key tips on how to discuss glucose levels with children or adolescents:
- Focus on the facts
- Focus on the behaviors, not the outcome
- Keep open lines of communications
- Be open to receiving feedback
- Validate their feelings around glucose levels or the way it’s discussed
To help illustrate these methods, here’s an example of a very common scenario: A caregiver gets an alert that their adolescent with diabetes is running high and wants to address it. The caregiver gets anxious when their teen with diabetes is high a lot because they worry about their long-term health. Despite their anxiety, they want to address it in a positive way.
Focus on the Facts
Glucose levels always fluctuate, so try to focus on it being data without being a stress-inducing or potentially judgmental conversation. (Extreme cases aside, of course.) Caregiver text to teen: “I noticed your CGM is reading 340 mg/dL. Have you taken a correction?”
Focus on the behaviors, not the outcome
Asking if the teen has taken a correction is a very easy way to focus on the behavior. As we all know, despite taking the proper actions, sometimes the outcome does not end up as intended or desired. Teen response: “Yeah, I know. I’ll give a correction now.” Caregiver response: Thumbs up emoji.
Keep open lines of communication
Let’s say in our scenario that the teen is still above 300 mg/dL three hours later. At this point, the caregiver reaches back out and asks when the teen will be home, suggesting they may need to change their infusion set. At this point, the adolescent gets frustrated and responds accordingly. Teen text to Caregiver: “You’re always on me about my diabetes. It’s fine; I know what I’m doing.”
Be open to receiving feedback
After seeing that message, the caregiver feels guilty for their child always having to worry about diabetes when other children don’t have this added burden. The caregiver decides to talk to the teen when they are home and after changing their infusion set and calming down. By engaging in a discussion, the caregiver keeps the lines of communication open and remains open to receiving feedback. Caregiver to teen in person: “I saw that my texts upset you earlier. Is there a better way I can communicate with you next time this happens?”
Validate their feelings around glucose levels or the way it’s discussed
It’s important to hold space for your child with diabetes’ feelings around diabetes and help them cope with them. Their feelings will change over time and depend on life circumstances. Like blood sugar levels, not talking about feelings does not make them disappear. Adolescent to caregiver: “It’s just so frustrating that diabetes gets in my way. I want to hang out with my friends, not worry about having to change my <insert expletives that your teen uses> infusion set.” Caregiver to teen: “I know, kiddo, it sucks that you have more to worry about and deal with than your friends without diabetes. That sounds really hard.”
Is this a magical formula that will work every time? No. Will you remember to utilize these strategies every time? Probably not. But it’s a place to start, and hopefully, these strategies will help you and your family reduce some of the conflicts around diabetes.
Written and clinically reviewed by Marissa Town, RN, BSN, CDCES