This is the first article in a series about how type 1 diabetes impacts pediatric patients and their parents/caregivers. To read part two of this series, click here.
Children with type 1 diabetes (T1D) face more health challenges and have higher rates of healthcare utilization than their peers without diabetes.1 While type 1 diabetes undoubtedly takes a huge toll on children affected by the disease, the impact it has on parents' mental health cannot be ignored.
Many parents of young children with type 1 diabetes experience increased stress due to fear that their child will have a hypoglycemic attack.2,3 This fear manifests itself in frequent nighttime blood glucose testing, leading to sleep deprivation for both parents and children, further impacting parents' mental health and children's behavior.2-5
To assess the impact of type 1 diabetes on parental psychological health and discuss potential solutions Endocrinology Advisor We spoke to three pediatric psychologists and endocrinologists involved in managing children with type 1 diabetes.
Common stressors for parents of children with type 1 diabetes
“It's a big step forward,” said Dr. Mark Heyman, director of the San Diego Diabetes and Mental Health Center. Endocrinology Advisor Managing type 1 diabetes continues to present a tough learning curve when it comes to the psychological wellbeing of a family's primary caregivers, who are often parents. “Parents often feel overwhelmed juggling daily management tasks such as counting carbohydrates, planning meals, administering insulin and attending to their child's other needs,” says Dr. Heyman.
Parents of children with type 1 diabetes may feel anxious about their child's blood sugar levels, especially at night or when they are at school or out with friends. “Some parents may feel guilty about their child having type 1 diabetes, which adds to the negative psychological effects of the disease,” says Dr. Heyman.
Unlike other chronic illnesses that may have periods of attacks and remission, diabetes “never has a day off,” said Nicole Curhan, PhD, a licensed psychologist at Nemours Children's Hospital in Jacksonville, Fla., and an assistant professor of psychology at the Mayo Clinic School of Medicine, adding that the chronicity of the disease can contribute to parental fatigue and diabetes-related caregiving burnout. “Furthermore, when blood glucose levels are outside of normal limits, they carry both short-term and long-term risks, which can cause anxiety and fear for parents, as well as other challenges specific to family functioning,” she said.
Many parents of children with diabetes can be overwhelmed by the ongoing care that comes with type 1 diabetes, and experts agree that parents need more education on how to best support their child's care.
The higher the parent's self-efficacy, [in helping their child manage blood sugar]”There may be more protection from potential symptoms of stress and depression that parents may be experiencing,” says Dr. Andrea Mucci, a pediatric endocrinologist at Cleveland Clinic Children's.. Parental stress can also reflect a child's own psychological state, she says: “For example, children who experience symptoms of depression, anxiety or behavioural problems are more likely to have parents who are similarly stressed.”
Parental psychological stress during development
Sarah Jensen, chief creative officer for the website Beyond Type 1 Parents of children with type 1 diabetes Endocrinology Advisor She says the disease takes an emotional toll on parents, but there's also a period of adjustment that ultimately leads to acceptance. “Our son is 14 now and he doesn't remember life without diabetes,” she says. “We really don't remember a time when diabetes wasn't a part of him.”
When Jensen's son was first diagnosed with type 1 diabetes, he was hospitalized for three days. “They stabilized him in the hospital while we took classes to learn how to keep him alive,” Jensen says. “We understood why they kept repeating the fact that he had to be checked his blood sugar so often and get up every two hours, but it only increased our anxiety. When he was released from the hospital, no one said a word to us that this was going to be a big deal for us.”
The stress associated with caring for a child with type 1 diabetes often changes throughout the child's life, but whether its severity ultimately abates varies from person to person. According to Dr. Mucci, reported rates of diabetes-related parental stress are highest at the time the child is diagnosed, and stress during this early period is a precursor to continued parental stress. “It should be noted that adolescence and young adulthood are particularly challenging times for these children, when diabetes management and parental stress may worsen,” he said.
Immediately after a type 1 diabetes diagnosis and when your child is young, your main stressors will center around the learning curve of figuring out how to manage the diabetes to keep your child safe, says Dr. Heyman. “But as your child gets older, your stress will center around your child's social development and helping them manage their diabetes on their own while helping them become independent.”
According to Dr. Kahan, stressors associated with the introduction of medications and diabetes treatment technologies tend to evolve as parents and children become accustomed to and proficient in using these management tools. Concerns about independent living, alcohol use, and other factors related to young adulthood can increase parental stress as children grow older.
Now that her son is a teenager and more independent, Jensen said mobile app-based technology has helped her better monitor his blood sugar levels, but it has also raised other concerns. “When I see that my son's levels are 'low' on the app I use to track them and he doesn't reply to my texts, I panic,” she said. “I don't think the fear ever goes away, we've just become desensitized to it, and that's not good.” Jensen said she and her family “are really tired at times and, as my son says, 'I hope one day I'll be okay.'”
How diabetes-related stress impacts your physical health
According to Dr. Heyman, research has shown that stress can contribute to a variety of physical health problems, including high blood pressure, heart disease, obesity, and even type 2 diabetes. Given this association, parents of children with type 1 diabetes may be at higher risk for these health problems than the general population.
“Furthermore, psychological stress experienced by parents due to their child's diabetes may affect their ability to reach their potential at work,” Dr. Heyman added. “Diabetes and the burden of caregiving may also affect parents' social relationships, hobby interests, and other aspects related to their quality of life.”
Dr. Kahan said parents of chronically ill adolescents may also show symptoms of trauma compared to parents of healthy children, and “there is an increasing emphasis in pediatric care settings on screening the mental health of parents and caregivers more regularly and addressing these needs or making referrals accordingly, when appropriate and appropriate.”
What can be done to ensure the psychological wellbeing of parents of children with type 1 diabetes?
Dr Heyman said a social support system could be a key factor in ensuring parents' wellbeing, especially in the early stages of their child's illness: “Parents need to know they're not alone and be able to contact other parents who understand their stress and can offer support and guidance on what they've done in similar situations.”
Dr. Kahan said it is an “ethical imperative” in her practice to recognize and assess the potential treatment needs of not only children with type 1 diabetes, but also their parents or guardians. “In some practices, this is formally integrated through regular screening, while in others it is more informal,” she said. “There is a growing body of research and treatment programs evaluating the positive impact of working with parents and guardians on their mental and physical health and how that relates to the health of their children.”
Supporting parental health also requires increased public awareness and consciousness about childhood type 1 diabetes, which could lead to more resources and knowledge being made available to family and friends of children with the disease, Dr. Mucci said. “As awareness of this important topic increases and more research is conducted, guidelines may begin to reflect recommendations by some experts that all parents of children with type 1 diabetes should be screened for diabetes and distress and managed appropriately. Healthcare providers should regularly assess how parents are coping and address gaps by reassuring, educating, changing management, or suggesting that parents consult their own doctor.”
References
- White NH. Long-term outcomes in young people with diabetes. Pediatric Clinic of North America. 2015;62(4):889-909. doi:10.1016/j.pcl.2015.04.004
- Viaen AS, van Dale T, Blais D, Faust K, Massa GG. Fear of hypoglycemia, parenting stress, and metabolic control in children with type 1 diabetes and their parents. J Clinical Psychology Set2017;24(1):74-81. doi:10.1007/s10880-017-9489-8
- Verbeeten KC, Perez Trejo ME, Tang K, et al. Fear of hypoglycemia in children with type 1 diabetes and their parents: Effects of pump therapy and continuous glucose monitoring with hypoglycemia interruption option in the CGM TIME trial. Childhood diabetes2020;22(2):288-293. doi:10.1111/pedi.13150
- de Beaufort C, Pit-Ten Cate IM, Schierloh U, et al. Psychological well-being of parents of young children with type 1 diabetes – baseline assessment. Front End Clinol (Lausanne)2021;12:721028. doi:10.3389/fendo.2021.721028
- Sweeney R, McKee ER, Streisand R. Parent-child interactions in type 1 diabetes: Associations between child behavior, parenting behavior, and pediatric parenting stress.. FAM System Health. 2014;32(1):31-42. doi:10.1037/fsh0000001