Empowering Families

Childhood is marked by innocence and playfulness and holds a myriad of experiences and emotions. And yet, some children must also manage a time-consuming chronic illness, such as Type 1 diabetes (T1D).

Nearly 15,000 new cases of the illness are diagnosed in children each year in the United States. It has been estimated that T1D accounts for nearly $14.9 billion in health care costs annually and ranks as one of the costliest chronic diseases in the U.S.

When Dr. Christine Feeley, an assistant professor in the College of Nursing, met parents of children with T1D, they reported elevated stress and anxiety levels over their caregiving and child’s future. Parents and children also reported not getting enough sleep. This fueled Feeley’s interest in studying the effects of T1D on parents and children, including sleep patterns.

“Sleep is a difficult topic for many people. As a pediatric nurse, I witnessed first-hand how hard it was for both children and parents to sleep while in the hospital,” Feeley said. “It was a vicious cycle — sleep-deprived parents coming into the hospital with their child, getting disrupted sleep at the hospital, then being sent home with discharge instructions and a laundry list of follow-up appointments and reminders.

“It made me wonder if, or rather how, the lack of sleep was impacting other parts of their lives. My first study focused mainly on parental caregivers, then I started looking at both the parent and child. I quickly realized that parents and children are often linked. If the child is not sleeping well, the parent isn’t either.”

Her focus on how sleep may affect children and their parents’ report of psychosocial and diabetes outcomes will determine the best practice for families navigating this disease and its long-term management.

“The acute and long-term complications of T1D can be devastating, including severe hypoglycemia, hospitalizations for diabetic ketoacidosis and, as adults, amputations, heart attacks and blindness,” Feeley said.

“As more and more children are diagnosed and sent home with a complex management plan, their parents are finding that they must assume a role beyond parenting that includes being a nurse, nutritionist, pharmacist, exercise specialist, physical therapist and case manager, among others. Children also must learn to take on these roles as they grow up and assume more responsibility for their diabetes management.”

A diagnosis of T1D comes with a multitude of lifestyle changes and care needs — everything from healthy eating and activity to insulin administration — that must now be carefully monitored and managed to avoid dangerous and costly complications. Hypoglycemia, for one, is a perpetual concern.

For parents to balance such responsibilities, adequate and good quality sleep tends to be a low priority, which may lead to chronic sleep deprivation.

“Understandably, between the fear of overnight hypoglycemia and the necessary steps to catch and treat low blood sugar, parents and children often report very disrupted and poor sleep,” Feeley said. “This can lead to downstream consequences, such as elevated feelings of fatigue, anxiety, stress and sometimes depressive symptoms, decreased overall quality of life and poorer health outcomes.”

Feeley’s research explores a child and a caregiver’s nighttime sleep experience while maintaining T1D management.

“It’s important to explore these elevated feelings of anxiety and loss of sleep to develop interventions for these families. I conducted a qualitative study that elicited powerful responses from parents who described their nighttime routines and struggles,” she said.

“They voiced a constant fear about their child maintaining a safe blood glucose level, regardless of the time of day. They also reported their sleep was chronically disrupted to monitor blood glucose levels.”

After the study, Feeley looked at parent and child dyads using wrist actigraphy, an objective measure of sleep, to see how the parent and child influenced each other.
“We found that parent and child sleep is highly correlated, which means that interventions should be aimed at both the parent and child,” she said.

“With no cure for T1D, finding ways to help children and families is important. There have been some interesting changes related to diabetes technology with the introduction continuous glucose monitoring, which may have a significant impact on sleep and daily functioning.”

According to Feeley, potential sleep interventions include specially tailored sleep phone apps, sleep-focused cognitive behavioral therapy and addressing sleep hygiene needs.
Regarding educational interventions, she said camps provide a great way for children with T1D to connect with each other and get lessons from health care providers.
“Talking to children about the importance of sleep, sleep habits and asking them how they are sleeping may be the first steps in opening up a wider dialogue,” Feeley added.
“Given the importance of sleep for diabetes management and overall quality of life for both parent and child, open and honest discussions about sleep routines and sleep problems are a starting point for providers and families.”

However, Feeley contends additional research is warranted to explore ways technology can be used to maintain nighttime safety and improve sleep for both children and parents.
“Childhood T1D has a substantial impact on both children and their caregivers, often their parents,” said Dr. Pao-Feng Tsai, associate dean for research in the College of Nursing. “The juggling of responsibilities between childcare, work and other family obligations can take a toll on parents’ well-being and potentially hinder their ability to provide the necessary care. Dr. Feeley recommends a family-centered treatment plan for children that encompasses consultations with patients and parents, with the goal of achieving the best possible treatment outcomes for everyone.”

Managing Type 1 Diabetes: Balancing Blood Sugar Day and Night

• Caregivers must monitor patients’ blood sugar so it doesn’t get too high or too low, and administer insulin in response to ever-changing conditions (eating, exercising, extreme changes, illnesses, elevated stress, and many other conditions that can influence blood sugar), and monitor their own symptoms. A person with T1D will usually need to check their blood sugar regularly throughout the day. This schedule may look different depending on the person and how they choose to monitor their blood sugar (continuous glucose monitors, pumps, or manual glucometers), but it usually happens around meals or snacks and can also happen before or even during sleep.

• If a person’s blood sugar gets extremely low and stays that low for an extended period of time, it can be dangerous since our brains and other organs require sugar to function. If a person with T1D has very low blood sugar overnight and doesn’t realize that their blood sugar is going dangerously low (because they are sleeping and can’t recognize the symptoms), it can lead to severe health consequences, even death. This is called overnight hypoglycemia. The medical term for low blood sugar is hypo, which means low, and glycemia, which means sugar. And a lot of parents and children with T1D have a fear of overnight hypoglycemia. Monitoring blood sugar before bed and even during sleep, can help to manage this. However, it comes at a cost. Many parents and children with TID will often talk about the cost/benefits ratio of managing their condition. Currently, there is no cure for TID, so it requires lifetime management.