Type 1 diabetes is a lifelong condition for which there is currently no cure. Caring for diabetes requires families to constantly balance and adjust daily insulin injections with food choices and physical activity. Regular blood glucose monitoring is an essential part of management.
Children with type 1 diabetes should be as healthy and active, and with optimal diabetes care should grow and develop as other children.
What to expect?
When a child is first diagnosed with diabetes, it is important that they are referred to a hospital that has access to diabetes education services, preferably with expertise in type 1 diabetes in children and adolescents. Sometimes they may be admitted to hospital for up to a week for management and diabetes education. Alternatively, this may occur on an outpatient basis, where they attend the hospital each day to learn about managing diabetes and go home at night. The decision regarding the type of early management depends on a number of factors such as severity of symptoms, location, age of the child, language or other difficulties.
Ideally, the child with type 1 diabetes and their family should be seen by a team of health professionals including a diabetes doctor/specialist, a diabetes educator, a diabetes dietitian, a social worker and/or psychologist. In some centres, not all of these members of the team will be available.
The diabetes team includes:
Diabetes Doctor / Specialist – this may be a doctor who specialises in the care of children and adolescents with type 1 diabetes, known as a paediatric endocrinologist. In other services it may be a Paediatrician, a doctor who specialises in the care of children who has an interest in diabetes in children. The diabetes doctor oversees all aspects of managing diabetes.
Diabetes Educator – a diabetes educator is usually a nurse who has specialised training in diabetes. The diabetes educator provides information and advice on the day to day care of diabetes.
Diabetes Dietitian – a diabetes dietitian is a health professional who specialises in nutrition. The diabetes dietitian provides information and advice on healthy eating for managing diabetes.
Social Worker – a social worker can help with the initial emotional and financial stress at diagnosis, and ongoing social support.
Psychologist – a psychologist may work with the social worker to help families cope with the psychological impact of the diagnosis of diabetes.
The diabetes team prescribes management and provides education and advice at initial diagnosis, as well as ongoing support. The continuing involvement of the diabetes team is essential and has been shown to improve long-term outcomes for the child and family.
The Diabetes Education Program
The initial diabetes education program should commence at diagnosis and continue over the following weeks and months. Many aspects of the diabetes education program will be reinforced regularly over this time as families often find it difficult to absorb the early information due to anxiety and shock about the diagnosis.
Education should be tailored to the needs of the child and family and include considerations such as age, stage of development, level of anxiety as well as language and literacy skills. The initial diabetes education program should include:
• What is diabetes?
Following the initial education program, the child with diabetes and their family should have regular contact with their diabetes team, either via telephone and / or attendance at clinic. This ongoing care includes insulin adjustment and general advice about the day to day management of diabetes.
All children with type 1 diabetes should have scheduled clinic appointments with their diabetes doctor at least 3 – 4 times each year or more often if needed. At each clinic visit the child’s weight and height will be measured and a special blood test called a HbA1c will be carried out. Yearly follow-up with a diabetes educator and dietitian is recommended, with extra appointments made if necessary.