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 problems and have higher rates of health care utilization compared to children without the disease.1 There is no doubt that T1D places a heavy burden on children with the disease, but its impact on the psychological well-being of their parents cannot be ignored.
Many parents of young children with T1D experience increased stress due to fear that their child will develop hypoglycemic episodes.2, 3 This fear manifests as frequent nocturnal blood sugar measurements, resulting in sleep deprivation for both parent and child, further impacting the parent's mental health and child's behavior.2-5
To assess the impact of T1D on parental psychological health and discuss possible solutions. Endocrinology advisor We spoke to three pediatric psychologists and endocrinologists who specialize in managing childhood T1D.
Common stress factors for parents of children with T1D
said Dr. Mark Heyman, director of the San Diego Diabetes and Mental Health Center. Endocrinology advisor T1D managers continue to face a steep learning curve regarding the psychological well-being of the family's primary caretakers, often parents. “Parents often feel overwhelmed juggling day-to-day administrative tasks such as counting carbohydrates, planning meals, administering insulin, and attending to their child's other needs,” Dr. Heyman says.
Parents of children with T1D may be concerned about their child's blood sugar levels, especially at night, when the child is at school, or out with friends. Some parents may feel guilty that their child has developed T1D, Dr. Heyman said, adding to the negative psychological effects of T1D.
Unlike other chronic diseases that have periods of flare-ups and remissions, diabetes doesn't take a “day off,” says Dr. McConlogue, a licensed psychologist at Nemours Children's Health in Jacksonville, Fla., and a Mayo Clinic psychologist. says Dr. Nicole Kahan, assistant professor at . The medical school added that the chronicity of the disease may contribute to parental fatigue and diabetes-related caregiving fatigue. “Furthermore, out-of-range blood sugar levels are associated with both short-term and long-term risks and can cause anxiety and fear in parents, as well as other difficulties specific to family functioning.” she stated.
The majority of parents of children with diabetes can experience distress due to the ongoing care that T1D requires, and increasing education among parents about how best to support their child's care Experts agree it is necessary.
“The higher the parent's self-efficacy, the more [in helping their child manage blood sugar]Dr. Andrea Mucci, a pediatric endocrinologist at the Cleveland Clinic, says:. Parents' distress can also reflect the child's own psychological state, she says. “For example, children who have more symptoms of depression and anxiety and behavioral problems are more likely to have parents who are struggling as well.”
Parental psychological stress across development
Sarah Jensen, Website Chief Creative Officer Beyond type 1 said a parent of a child with T1D. Endocrinology advisor While the disease can place a psychological burden on parents, there is an adjustment period that ultimately leads to acceptance of the disease. “My son is 14 years old now, and he doesn't remember his life without diabetes,” she said. “We don't really remember that being a part of him.”
When first diagnosed with T1D, Jensen's son spent three days in the hospital. “They stabilized my son while we took classes to learn how to keep him alive,” she said. “I understand why they forced us to test our blood sugar multiple times and wake up every two hours, but it made us more anxious. When he was discharged from the hospital, no one ever said this was going to be difficult for us.”
The stress associated with caring for a child with T1D typically changes throughout the child's life, but the ultimate reduction in severity varies by individual. According to Dr. Mucci, reported rates of parental diabetes-related distress are typically highest at the time the child is diagnosed, and distress during this early period is a predictor of sustained parental stress. That's what it means. “It should be noted that adolescence and young adulthood are particularly difficult times for these children, which can result in reflexive deterioration in diabetes control and distress for parents,” she said. .
According to Dr. Heyman, immediately after a T1D diagnosis and when a child is young, the main stressors revolve around the learning curve of understanding how to manage diabetes to keep the child safe. “But as the child gets older, stress revolves around the child's social development and helping the child become independent while also allowing the child to manage their diabetes on their own.”
According to Dr. Kahan, the stressors associated with the introduction of medications and diabetes-related technologies tend to evolve as parents and children become familiar with and proficient in using these management tools. Concerns about independent living, alcohol use, and other factors associated with young adulthood can increase parental distress as children grow older.
Jensen, whose son is now a teenager and more independent, said while mobile app-based technology allows her to better monitor her son's blood sugar levels, it also raises other concerns. “When I see he's 'low' on the app I use to track his blood sugar levels and he's not responding to my texts, I panic.” she said. “I don't think the fears will ever go away. We've just become more and more desensitized to them, which isn't all that great.” Jensen said she and her family “get really tired sometimes.” As my son says, “I just want you to feel better for one day.''
How diabetes-related distress affects physical health
According to Dr. Hayman, research shows that stress can lead to several physical health problems, including high blood pressure, heart disease, obesity, and even type 2 diabetes. Given this association, parents of children with T1D may be at higher risk for these health problems than the general population.
“Furthermore, when parents experience psychological stress because of their child's diabetes, it can impact their ability to reach their potential at work,” Dr. Heyman added. “Diabetes and the burden of caregiving can also affect parents' social relationships, hobby interests, and other aspects related to quality of life.”
Dr. Kahan said that compared to parents of healthy children, parents of chronically ill young people can also exhibit symptoms of trauma. “Pediatric healthcare settings can more regularly screen parents and guardians for their mental health and address these needs or make appropriate referrals where appropriate. It is becoming increasingly important.”
What can be done to ensure the psychological well-being of parents of children with T1D?
Social support systems can be an important aspect in ensuring parental well-being, especially in the early stages of a child's illness, Dr. Hayman said. “Parents need to understand that they are not alone, understand the stress and be able to connect with other parents who can provide support and guidance about what they have done in similar situations. ”
Dr. Kahan said it is an “ethical obligation” in her practice to recognize and assess the potential treatment needs of children with T1D, as well as their parents and guardians. “While some practices have this formally incorporated through routine testing, others have it more informally,” she said. “Research and treatment programs work with parents and guardians to assess the benefits of positively impacting children's physical and mental health and how this relates to child health. The number of cases being evaluated is increasing.
Supporting parental well-being may also depend on increased public awareness and awareness of childhood T1D, which may increase the resources and knowledge available to families and friends of children with the disease. Dr. Mucci said that there is. “As awareness of this important topic grows and more research is conducted, the guidelines will continue to do what some experts have suggested: ensure that all parents of children with T1D are screened for diabetes and distress and that it is appropriately managed. Healthcare providers may periodically assess how parents are coping and provide reassurance, education, changes in management, or the parents themselves. gaps should be addressed, including by suggesting that patients consult their primary care physician.
References
- White NH. Long-term outcomes in young people with diabetes. North Am Pediatric Clinic. 2015;62(4):889-909. doi:10.1016/j.pcl.2015.04.004
- Viaen AS, Van Daale 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 Clin Psychol Med Setting. 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: Effects of continuous glucose monitoring with pump therapy and low glucose suspend options in the CGM TIME trial. childhood diabetes. 2020;22(2):288-293. doi:10.1111/pedi.13150
- de Beaufort C, Pit-Ten Cate IM, Schierloh U, et al. Psychological health of parents of young children with type 1 diabetes – baseline assessment.. Anterior Endocrinology (Lausanne). 2021;12:721028. doi:10.3389/fendo.2021.721028
- Sweeney R, McKee ER, Streisand R. Parent-child relationships in type 1 diabetes: Relationships with child behavior, parenting behavior, and child-rearing stress.. femme cyst health. 2014;32(1):31-42. doi:10.1037/fsh0000001