This is the first article in a series on the impact of type 1 diabetes on pediatric patients and their parents and caregivers. Click here to read Part 2 of this series.
Children with type 1 diabetes (T1D) face more health challenges and have higher health care utilization rates compared with their peers without the condition.1 While T1D undoubtedly puts a significant burden on children with the disease, the impact it has on their parents’ psychological wellbeing cannot be ignored.
Many parents of young children with T1D experience increased stress due to fear of their child having a hypoglycemic episode.2,3 This fear can manifest itself as performing frequent nocturnal blood glucose measurements, resulting in sleep deprivation for both parents and children, which further affects the parents´ mental wellbeing and their child’s behavior.2-5
To gauge the effects of T1D on the psychological wellbeing of parents and to discuss potential solutions, Endocrinology Advisor spoke with 3 expert pediatric psychologists and endocrinologists involved in the management of childhood T1D.
Common Stressors in Parents of Children With T1D
Dr Mark Heyman, head of the Center for Diabetes & Mental Health in San Diego, told Endocrinology Advisor that T1D management continues to face a steep learning curve regarding the psychological wellbeing of the primary caretakers in the family, which are often the parents. “Parents often feel overwhelmed trying to keep up with juggling the daily management tasks, such as carb counting, meal planning, insulin dosing, and caring for their child’s other needs,” Dr Heyman said.
Parents of children with T1D may also experience anxiety around their child’s blood sugars, especially at night, and when the child is at school or out with friends. “Some parents may also feel guilt that their child developed T1D, further contributing to the negative psychological impact of the condition, according to Dr Heyman.
Unlike other chronic health conditions, which may have periods of flares and remissions, diabetes doesn’t “take a day off”, Dr Nicole Kahhan, a licensed psychologist at Nemours Children’s Health in Jacksonville, FL and assistant professor of psychology at the Mayo Clinic College of Medicine, said, adding that the chronicity of the disease can contribute to fatigue and diabetes-related care burnout among parents. “Additionally,” she said, “out-of-range blood glucose values are associated with both short- and long-term risks which can cause anxiety and fear in parents as well as other difficulties specific to family functioning.”
The majority of parents of children who have diabetes can become distressed due to the constant care T1D requires, and experts agree there is a need for greater education among parents regarding how best to support the care of their child.
“The higher the parental self-efficacy [in helping their child manage blood sugar], the greater possible protection there is from potential symptoms of stress or depression that these parents can experience,” said Dr Andrea Mucci, pediatric endocrinologist at Cleveland Clinic Children’s. Parental distress can also reflect the psychological state of the child themselves, she said. “For instance, children with more depressive or anxiety symptoms and/or behavioral issues are more likely to have parents that are also distressed.”
Parental Psychological Stress Throughout Development
Sara Jensen, Chief Creative Officer for the website Beyond Type 1 and parent of a child with T1D, told Endocrinology Advisor that, while the condition can take an emotional toll on parents, there are adjustment periods which ultimately culminate into acceptance of the disease. “My son is now 14, and he does not remember his life without diabetes,” she said. “We don’t really remember it not being part of who he is.”
When he was first diagnosed with T1D, Jensen’s son spent 3 days in the hospital. “They stabilized our son while we took classes to learn how to keep him alive,” she said. “While I understood the reasons why they drilled into us the number of times we had to check his blood glucose and that we had to wake up every two hours, it heightened our anxiety. When he was discharged, no one ever once mentioned that this would be hard for us.”
Stress associated with taking care of a child with T1D typically change throughout the child’s life, but whether the severity eventually lessens varies among individuals. According to Dr Mucci, reported rates of parental diabetes-related distress are typically highest at the time their child is diagnosed, and the distress during this initial period represents a predictor for persistent parental stress. “It should be noted that adolescence and young adulthood can be a particularly challenging time for these children and may result in a reflective worsening in diabetes control and parental distress,” she said.
Immediately following a diagnosis of T1D and/or when the child is young, the primary stressor revolves around the learning curve in understanding how to manage diabetes to keep the child safe, according to Dr Heyman. “As the child gets older, however, the stress revolves around the child’s social development and helping them gain independence while also making sure they are managing diabetes on their own.”
Stressors corresponding with the introduction of medications and diabetes technologies tend to evolve as parents and children become more accustomed to and competent in their ability to use these management tools, according to Dr Kahhan. Concerns regarding independent living, alcohol use, and other factors more relevant to young adulthood may increase distress among parents as their children get older.
Jensen, whose son is now a teen and has become more independent, said that while mobile app-based technology allows better monitoring of her son’s blood glucose levels, it also raises other concerns. “When I can see he is “low” on the app we use to track his blood glucose and he is not answering my texts, I panic,” she said. “I don’t think that the fears ever go away; we just have become more desensitized to them, which is not that great either.” Jensen said she and her family “are just really tired sometimes, and as our son says, ‘I just want one day to be OK.’”
The Impact of Diabetes-Related Distress on Physical Health
According to Dr Heyman, research has shown stress can contribute to several physical health problems, such as high blood pressure, heart disease, obesity, and even type 2 diabetes. Given this association, there’s a possibility the parents of children who have T1D are at a higher risk of these health issues than the general population.
“In addition, when parents experience psychological stress due to their child’s diabetes, it can impact their ability to achieve their potential at work,” added Dr Heyman. “Diabetes and the burden of providing care can also impact parents’ social relationships, their interest in hobbies, and other aspects related to quality of life.”
Trauma symptoms can also be displayed in parents of chronically ill youth compared with parents who have healthy children, Dr Kahhan said. “There is a growing emphasis in pediatric health settings to more regularly screen the mental health of parents and guardians, and, when applicable and appropriate, to treat these needs or to refer out accordingly.”
What Can Be Done to Ensure the Psychological Wellbeing of Parents of Children With T1D?
Social support systems may be an important aspect of ensuring parental wellbeing, particularly earlier on in the course of a child’s condition, Dr Heyman said. “Parents need to know they are not alone and can contact other parents who understand their stress and who can provide support and guidance about what they have done in similar situations.”
It is “an ethical imperative” in her practice to recognize and evaluate the potential treatment needs of not only the child with T1D but the child’s parent or guardian as well, Dr Kahhan said. “In some health care settings this is formally being integrated via regular screenings, and in others it is being done more informally,” she said. “Increasingly, research and treatment programs are evaluating the benefits of working with parents and guardians to positively impact their physical and mental health and to evaluate how this is related to the child’s health.”
Supporting parental wellbeing may also rely on improving society’s perceptions and awareness around pediatric T1D, which may increase the availability and knowledge of resources for family and friends of children with the condition, Dr Mucci said. “As increased awareness is brought to this important topic and further research is done, guidelines may start to reflect what some experts have suggested: that all parents of children with T1D be screened for diabetes and distress and managed appropriately. Healthcare providers should regularly assess how parents are coping and address gaps, whether that be with reassurance, education, changes in management, or perhaps suggesting the parents themselves speak to their own physician.”
- White NH. Long-term outcomes in youths with diabetes mellitus. Pediatr Clin North Am. 2015;62(4):889-909. doi:10.1016/j.pcl.2015.04.004
- Viaene AS, Van Daele T, Bleys D, Faust K, Massa GG. Fear of hypoglycemia, parenting stress, and metabolic control for children with type 1 diabetes and their parents. J Clin Psychol Med Settings. 2017;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: effect of pump therapy and continuous glucose monitoring with option of low glucose suspend in the CGM TIME trial. Pediatr Diabetes. 2020;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 very young children with type 1 diabetes – baseline assessment. Front Endocrinol (Lausanne). 2021;12:721028. doi:10.3389/fendo.2021.721028
- Sweenie R, Mackey ER, Streisand R. Parent-child relationships in type 1 diabetes: associations among child behavior, parenting behavior, and pediatric parenting stress. Fam Syst Health. 2014;32(1):31-42. doi:10.1037/fsh0000001