Resilience in Times of Distress: How the COVID-19 pandemic has affected families managing Type 1 Diabetes

Given the constant vigilance required in the care of diabetes, successful management demands significant mental effort. While the normal ebbs and flows of life will always provide challenges to a patient’s wellness, the disrupted routines and increased isolation during the pandemic have put significant strain on patients with diabetes and their families. Using her expertise directing the Resilience and Diabetes Behavioral Research Lab (RAD Lab) at Texas Children’s Hospital and Baylor College of Medicine, pediatric psychologist Dr. Marisa Hilliard can shed some light on the connection between behavioral medicine and diabetes management.  

Throughout the pandemic, Dr. Hilliard and her team have continued their study of the everyday life experiences and mental health of young people with type 1 diabetes. In addition to mood disorders, which are 1.5 - 2 times more common in people with diabetes, Dr. Hilliard and her team are looking for signs of diabetes related distress and diabetes burnout. She states that “in general, diabetes burnout is like an acute experience of severe diabetes related distress. There is a sense of diabetes being too much and a constant source of burden and work and emotional distress. Burnout is when it gets to the point of exhaustion and becomes a crisis.” While mood concerns, including depression, diabetes distress and burnout, are common in young people with diabetes, there are strategies to prevent and treat them. 

Looking for diabetes related distress and diabetes burnout 

For anyone treating children with diabetes, it is important to look for signs of diabetes related distress in both the patient and their caregivers. Dr. Katherine Gallagher is a psychologist at Texas Children’s Hospital who specializes in working with youth and families affected by chronic medical conditions such as diabetes. She emphasizes that “diabetes distress can look different for different people, but common signs include increased irritability or frustration about daily diabetes tasks, more arguing or tension when talking with caregivers about diabetes, or feeling guilty or sad about blood sugar variations.” Providers and families should be especially cognizant of diabetes related distress at times of transition, such as entering adolescence.  

Clinicians can partner with parents and patients by educating them about these warning signs. Texas Children’s has been implementing screening ​​for mood disorders as part of routine diabetes care appointments, which can help systematically monitor for these concerns. Social workers and licensed psychologists can also evaluate for signs of diabetes distress. Early recognition allows a person’s support team to intervene and can often reduce the risk of diabetes burnout. If you see signs that are concerning for diabetes related distress, one tip that Dr. Gallagher recommends is, “teaching kids to treat their blood sugar numbers like data but not a grade. If it goes up or goes down, it doesn’t mean that you’ve failed at diabetes. Make it OK for kids and teens to ask for help and problem solve.”   

Data coming out of the RAD Lab at Texas Children’s Hospital also offers insight with regards to the pandemic. “In parents of little kids and in teens and young adults with type 1, what we have been seeing in our research samples, both here in Houston and with our collaborators across the country, is that a lot of people are struggling with the pandemic. And at the same time, many are doing well when it comes to diabetes.” Though their lab has found significant burdens of stress and depressive symptoms in their research participants, they have also found that for many, everyday diabetes management has stayed relatively stable. This marker of resilience may be due to ways in which changes to everyday activities during the height of the pandemic made diabetes easier to manage, such as increased parental oversight in diabetes tasks or fewer competing demands.  

Diabetes Resilience 

Dr. Hilliard studies “Diabetes Resilience”, which is a way of thinking about how people with diabetes can manage their disease and have good overall quality of life while facing stressors and challenges, daily inconveniences, small pains and even significant threats. “The protective effect, that people are still managing their diabetes pretty well even in the midst of this pandemic, is a real example of resilience. When things are prickly or difficult in other areas of life, families can promote diabetes resilience by putting protective wrap around diabetes – this can include efforts to maintain diabetes management routines and trying to communicate in a positive supportive way with one another about diabetes, even when there is a lot of stress going on,” says Dr. Hilliard. It is also important to recognize and treat mood changes that suggest diabetes distress, depression, or anxiety early. Part of being resilient is being willing and able to address mental health concerns as they arise.  

Every practitioner can help their patients work toward diabetes resilience, and Dr. Hilliard’s research offers some concrete and effective approaches to this end. She emphasizes that supportive adults are crucial to a child or teen’s success with diabetes. The more that stress and judgement can be removed from conversations around diabetes, the more a child will feel capable in the face of their struggle with it. “Anything that diabetes care providers and parents can do to recognize what kids are doing well – especially noticing all of the efforts they are putting into managing their diabetes – can really help to decrease the stress around diabetes,” she adds.  

Social support is also an effective tool for preventing diabetes related distress. “We want to encourage young people to connect to their friends, and potentially to get to know other kids with diabetes,” Dr. Hilliard says. Through the Texas Children’s Hospital community partnerships, as well as individual organizations nationwide, group information sessions and summer camps are available and can allow kids to make friends and rise above feelings of isolation.  

What to watch for during the pandemic 

Dr. Hilliard also has some recommendations for healthcare practitioners that are especially relevant during the COVID-19 pandemic. The first is to monitor for mental health concerns, including depression and diabetes distress, and to help patients and families get connected to mental health care. The Texas Children’s Hospital diabetes team conducts routine depression screening at diabetes care appointments, which has been an important program during the pandemic, when mood concerns are very common.  

The second is to ask about sleep and if necessary, work on ways to improve it. Her research suggests that sleep patterns have been negatively affected during the pandemic, which is concerning because poor sleep is correlated with more difficulty with diabetes management and with elevated hemoglobin A1c levels.  

The third is to ask about patients’ and families’ feelings about getting vaccinated. She recommends that clinicians open a conversation about the vaccine with their patients and present encouragement and information without judgement in these discussions. The American Diabetes Association encourages all patients with diabetes who are five years of age and older to get the COVID-19 vaccine, due to the increased risk of complications in children with diabetes who contract the disease. 

At times of low infection rates, Dr. Gallagher has seen her patients benefit from transitioning back to in-person social activities. While she has seen tentativeness around social situations during the pandemic, even unrelated to concerns about infection, she says, “I really try to encourage maintaining social connections, including activities and seeing friends, in safe ways.” She encourages families to speak with children’s pediatricians and endocrinologists about strategies for safe socialization during the ongoing COVID pandemic.  

Despite the pressures that clinicians can face to focus on glycemic control, Dr. Hilliard’s research shows that it is essential to also address diabetes related distress and resilience. “We have a lot of resources. Texas Children’s Hospital, especially in diabetes, is really intentional about behavioral health.” With social workers and psychologists who have specialized expertise in diabetes and mental health, as well as group programs, Texas Children’s Hospital has created a network of support for their patients. To increase access to that type of support to other areas of the country, Dr. Hilliard has partnered with other health care professionals and the American Diabetes Association to create a nationwide registry of mental health professionals who have experience with diabetes. As we continue to move through the pandemic, these resources can help you partner with your patients to promote mental health and support optimal diabetes management.