A family support guide
Dr. Cassie Irwin
Receiving a diagnosis of childhood type 1 diabetes sends a shockwave through the whole family. As the family grapples with the changes necessary for managing the condition, it’s common for the child, their parents, and siblings to feel shock, distress, and anger in the initial stages of the diagnosis.
But with the right support systems, tools, and resources, the entire family can develop skills and behaviours that can change the trajectory of their physical and mental health for the better in the years to come.
Type 1 diabetes is an autoimmune condition involving the destruction of the pancreatic beta cells, which produce insulin. Hampered insulin production impairs glucose control, which can cause life-threatening attacks and long-term complications.
By comparison, type 2 diabetes is a metabolic disorder involving insulin resistance and consequent elevations in blood sugar. While early-stage type 2 diabetes is often reversible through diet and lifestyle modifications, type 1 diabetes is a lifelong condition.
Type 1 diabetes is the most common endocrine disorder among children, and its yearly incidence is rapidly rising. Considering the severity of the disease, good management is top of mind for parents of children who are newly diagnosed.
“Whether your child has been diagnosed as an infant, toddler, child, or teen, yours and your family’s life will inevitably change,” says Dr. Morgan Ramsay, naturopathic doctor in Barrie, Ontario. Having been diagnosed with type 1 diabetes at age 12, Ramsay speaks from personal experience when guiding her patients on blood sugar and insulin management.
Parents of a child newly diagnosed with diabetes may feel overwhelmed. Making sense of the information presented by their child’s doctor, contemplating the diet and lifestyle changes required, and calculating insulin dosages are just some of the many new tasks rapidly piled onto an already full plate.
“Anxiety about your child’s health is now part of your new normal,” confirms Ramsay. “It will never go away, but it does get better. My mom can attest to this!” Despite the initial overwhelm, education and practice make for a smoother experience going forward.
“You’ll become more confident in your ability to support your child and will come to realize that although diabetes will modify your lives, it won’t define them.”
Managing young children’s diabetes is challenging, considering their complete dependence on parental care. Additional complexities include the unpredictability of children’s behaviour, their constantly growing bodies, and having to trust their care to others when sending them to school, sports, and friends’ homes.
Good management of type 1 diabetes in the first few years after diagnosis is key for setting children with a type 1 diabetes diagnosis on a positive trajectory. Poor management not only increases adverse health risks but may also foster a negative attitude toward the disease, which is resistant to change in the years to come.
Encourage their involvement as early as possible. “Depending on age, your child’s ability to perform daily diabetes tasks can widely vary,” says Ramsay. “Having kids participate with finger pricks, injections, and food choices as young as they safely can helps foster a sense of autonomy and control over their own health.”
Newly diagnosed kids may also feel isolated and anxious in social settings, especially if they’re asked about wearing a medical alert bracelet. “Role-playing conversations with friends or preparing answers to questions they may encounter can be helpful,” says Ramsay.
Build a diabetes support team at home, school, and in health care settings. Consider joining a support group, having regular check-ins with a mental health professional, and communicating regularly with friends and family.
“The intent behind building a diabetes care squad is truly to create a seamless feeling of support,” says Ramsay. “It’s a completely judgment-free zone where both you and your child can turn to when diabetes gets tough (it will—it’s normal!).”
Diabetes-related lifestyle changes implemented as a family encourage the maintenance of healthy behaviours. “Facilitate conversations with family on what diabetes is, how your child will be managing their health, and how to help them when needed (for example, recognizing and treating low blood sugar),” says Ramsay. Involve their siblings by showing them how to inject insulin or check blood sugar in emergencies.
“Work with your child’s school to create an individual care plan at the start of every school year (or upon initial diagnosis), outlining the roles and responsibilities of school personnel, parents, and the child,” recommends Ramsay. Consider age, mealtimes, blood sugar checks, insulin administration, and physical activity.
A multidisciplinary approach to type 1 diabetes management includes medical and psychosocial professionals such as social workers, nurses, counsellors, and dietitians. “Keep lines of open communication and encourage your child to ask their own questions to promote early self-advocacy,” recommends Ramsay.
Make use of apps such as MyFitnessPal and mySugr for carbohydrate counting and to determine insulin needs at every meal.
The Glooko and Dexcom Clarity apps collect data from continuous glucose monitors and blood sugar meters, which can be sent to your child’s health care team.
Despite the obvious challenges thrust upon children who have to manage diabetes alongside the normal slings and arrows of growing up, there is light at the end of the tunnel. Managing diabetes can hone kids’ body awareness, responsibility, and adaptability.
“Diabetes has taught me perseverance when facing challenges, confidence when making decisions, and a deep understanding of how to work with my body rather than fighting against it,” shares Ramsay. “It has undeniably shaped me into the person I am today, and for that—I choose to celebrate!”
Seek medical care straight away if your child displays any of these early signs and symptoms of type 1 diabetes:
· excessive thirst
· increased urination
· increased hunger
· weight loss
The lifestyle changes required for diabetes management can lead to psychosocial problems for the child and their family. Family stress is associated with poorer glycemic control among children with diabetes.
Parental fear of hypoglycemia and lack of family routines are associated with reduced sleep quality in parents and children.
Mothers of children with diabetes report lower resilience and higher depressive symptoms than their peers with nondiabetic children.
Children and teens with greater body awareness and an open-minded attitude toward their disease tend to have improved metabolic control.
Teens may develop disordered eating as a maladaptive coping mechanism related to their diabetes diagnosis.
The good news: embracing mental wellness therapies can reduce family stress and may promote better glycemic control. A study conducted among children and teens with type 1 diabetes showed that after an eight-week self-compassion program, the participants reported reduced loneliness, enhanced mindfulness, and improved coping skills.
This article was originally published in the November 2023 issue of alive magazine.