When people talk about childhood diabetes, they almost always mean type 1 diabetes in children: an autoimmune disease that usually appears in childhood or adolescence and lasts for life. It starts suddenly and quickly changes the whole family’s daily routine, with blood sugar to check, insulin to dose and carbohydrates to count at every meal. There is effective treatment, but no cure. Anna Lucia Ogliari is Associate Professor of Clinical Psychology at Vita-Salute San Raffaele University and head of the Developmental Age Clinical Psychology Unit at the Turro site of IRCCS San Raffaele Hospital (IRCCS is the official title for research hospitals in Italy). Together with paediatric diabetologist Riccardo Bonfanti, Associate Professor of Paediatrics at UniSR, she explains how children with diabetes grow up and what can help their families.
After the diagnosis, parents enter a state of hypervigilance. They have to learn new tasks, from counting carbohydrates to managing a sensor and an insulin pump. The onset is often sudden, and many children and teenagers remember that day in detail. Some even “celebrate” its anniversary as if it were a birthday.
«I think it’s hard to talk about acceptance when you’re dealing with such a disabling illness. I prefer to talk about adaptation. Children with diabetes and their parents grow up together, and they grow up well», Ogliari says.
For parents, adapting means learning every skill they need and then passing those skills on to their child, little by little, as the years go by. «To manage type 1 diabetes, you need to get to know each child’s blood sugar patterns well and, over time, leave more and more of the management to the child». At first, parents do everything. Between the ages of 11 and 14, diabetes camps are usually very helpful: children learn to change the infusion set on their insulin pump and to handle the unexpected on their own.
Psychological support also helps young people see themselves as separate from the illness; otherwise the diagnosis can become their identity. «It’s something we never tire of repeating: we often remind young people that they have diabetes, but they are not their diabetes», she adds.
Adolescence is perhaps the most delicate stage in managing type 1 diabetes. In the United States, the T1D Exchange registry holds data on more than 22,000 people. From 2016 to 2018, it recorded the highest levels of glycated haemoglobin (HbA1c) in 15- to 18-year-olds, with an average of 9.3%. Only 17% of children and teenagers reached the recommended target. At that time, continuous glucose sensors were still uncommon, so today’s figures may be better.
The reasons are partly biological: puberty hormones make the body less sensitive to insulin, so the diabetologist often has to adjust the doses. There is another factor too. These are the years when young people take over the management of the illness from their parents, just when their bodies and how others see them start to matter more.
«You wear the device day and night, and in adolescence and beyond, its visibility weighs on you. There’s a simple example that always strikes me: a girl wants to go out dancing in a summer dress. Where can she put the device? Some girls go without the sensor for a night, and that’s when the risk becomes real. Without readings, ketoacidosis can go unnoticed, and when she gets home, her parents may put her feeling unwell down to the night out», Ogliari says.
A study published in 2020 in Diabetes Technology & Therapeutics involved 411 teenagers with type 1 diabetes. Almost six in ten named having to wear the devices as one of the barriers to using them, and a third said that having them on their body was uncomfortable. Those who listed more barriers reported more diabetes-related stress, more family conflict and more symptoms of depression.
Emotions and blood sugar are linked. When someone feels anxious, the body releases stress hormones such as adrenaline and cortisol, which raise blood sugar levels. Before a class test or an exam, blood sugar can rise even if the person hasn’t eaten. When it shoots up, anxiety grows too, and a vicious circle begins.
Anger and impulsiveness flare up more quickly when levels are high, Ogliari notes.
While families adjust to the diagnosis, anxiety levels rise in both children and parents, but usually return to normal over time. The anger that comes with discovering a chronic illness fades more slowly than anxiety, even in young children. For some, anxiety lasts longer. A systematic review published in 2016 analysed 14 studies, and in some of them up to 32% of children and teenagers with type 1 diabetes showed high levels of anxiety.
Counting carbohydrates and calories becomes a daily habit at the very age when the body is changing. When the disease first appears, many children and teenagers lose weight quickly, because without insulin the body cannot use glucose. With treatment, their weight returns to normal. «Children and young people with type 1 diabetes are at greater risk of developing disordered eating behaviours. The most common eating disorder is diabulimia, because young people notice that when they don’t inject all their insulin, they lose weight», Ogliari explains.
The data confirm the risk. A systematic review published in 2013 in Diabetic Medicine analysed 13 studies. It found disordered eating behaviours in 39% of teenagers with type 1 diabetes, compared with 32.5% of their peers without diabetes, and eating disorders in 7%, compared with 2.8%. On average, young people with these difficulties have poorer blood sugar control. For this reason, the 2022 guidelines of the International Society for Pediatric and Adolescent Diabetes (ISPAD) recommend regular screening, from the age of 12, for eating problems, symptoms of depression and diabetes-related distress.
At IRCCS San Raffaele Hospital, a psychologist is part of the diabetes team from diagnosis, together with doctors and dietitians. For Ogliari, this is a question of method: it gets the professionals working as a team, with one another and with the whole family. Riccardo Bonfanti, Associate Professor of Paediatrics at UniSR and head of the Paediatric Diabetology and Metabolic Disorders Unit at IRCCS San Raffaele Hospital, describes a two-step pathway. «Everyone talks to the psychologists and starts outpatient sessions in the first year of the illness. Then, one year after onset, we take stock to see whether the child is adapting or not».
With childhood diabetes, the level of psychological support varies from person to person. «Not all young people with diabetes need structured psychotherapy, but they all need psychological support», Ogliari sums up. The tools range from cognitive behavioural techniques to imagery and relaxation, and one of the simplest works on the words patients use. One young patient kept saying that her insulin pump hurt. Over time, she came to say that it hurt when she inserted it the wrong way, and that the rest of the time it made her angry.
Diabetic ketoacidosis is an acute complication of type 1 diabetes. When the body lacks insulin, it cannot use glucose and starts burning fat. This produces ketones, substances that make the blood too acidic. In the most serious cases, the person can lose consciousness and even fall into a coma. Sometimes ketoacidosis is the first sign that someone has the disease.
An episode of ketoacidosis can also affect the brain, although some of the changes wear off over time. «When patients come to the ward with an episode of ketoacidosis, our job is to carry out a cognitive assessment», she says. This assessment shows whether the episode has left any lasting effects. The article on type 1 diabetes and the brain explains how high blood sugar affects brain development outside emergencies too.
Many people still confuse the two types of diabetes. Type 1 is an autoimmune disease, while type 2 is linked to metabolic syndrome. «Young people are often told that a few changes to their diet will cure them, but that’s not the case at all: this is a chronic disease», Ogliari stresses. After the diagnosis, once they are back home, many families feel alone, because the people around them struggle to understand. Parents also end up doing two jobs at once. When an eight-year-old is at school, a mother or father gets the sensor’s alerts on their phone and has to call and sort things out from work. That is why it matters so much to care for the carers: the parents, and the brothers and sisters.
Siblings experience the illness from a different angle, because their parents’ attention inevitably focuses on the child with diabetes. A study carried out in Egypt and published in 2023 in the Journal of Pediatric Nursing involved 100 siblings of children with type 1 diabetes. Of these, 38% had significant emotional or behavioural problems, which were more common when their sibling’s blood sugar control was poorer and their parents’ stress was higher. Support from friends and family, together with good coping skills, helped them adapt better.
Guidelines always include a psychologist in the care pathway, but in some parts of Italy structured psychological care is still hard to find. On 8 October 2026, Italy’s Official Gazette published the implementing decree on paediatric screening for type 1 diabetes and coeliac disease. The test will be voluntary and offered to children aged 5 to 6 at the same time as their routine vaccinations.
Type 1 diabetes in children needs treatment that changes with age, and children, teenagers and parents ask new questions along the way. That is why the psychologist stays in the team from diagnosis through adolescence.
Anyone who wants to work in this field as a clinical psychologist can train at the UniSR Graduate School in Clinical Psychology.