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Psychosocial care for young people with diabetes

For many young people and their families, a diagnosis of diabetes is a significant trauma, in terms of both the physical implications and the effects on their emotions, self-esteem, and ability to cope with building a ‘new normal’ life that includes diabetes management. Unlike other diseases for which medical care decisions are made by specialists, many responsibilities for the dayto-day clinical management of diabetes are transferred from the healthcare team to the young persons and their family immediately after diagnosis. For younger children, in reality, the parents have to assume full responsibility, thus becoming ‘the patient’. Later on, school staff will also have to assume responsibility for some of the daily, complex coordination of food, exercise, blood glucose monitoring, and medication required for the child to achieve stable blood glucose levels. Diagnosis of diabetes, particularly type 1 diabetes mellitus (T1DM), therefore presents a sudden and vital requirement for the young persons and/or their parents to develop diabetes management skills as quickly as possible. The issues must be handled competently to avoid the risk of serious short-term consequences such as diabetic ketoacidosis–the leading cause of death and disability worldwide in children with T1DM–or serious low blood glucose levels, which can result in seizures, loss of consciousness, and sometimes death. Dealing with these risks requires a complete reorganization of the family’s routines, responsibilities, and expectations. All young people with diabetes and their families need a certain level of psychosocial support to build a ‘new normal’ life and a healthy care environment at home. Some families, depending on the degree of other stresses and available resources, will require more extensive psychosocial support than others. Without psychosocial support, children with diabetes do not do well in any developmental domain–physical growth, emotional maturity, or cognitive development–and some young people who are not given adequate psychosocial support do not survive. Diabetes is both a chronic and a progressive disease, so the need for support continues, grows, and changes as children develop to adulthood. During this time, the normal trials of growing up are overlaid with the anxieties of coping with the physical problems of diabetes and all the many ways in which their condition makes them different from (and feel different from) their friends and classmates. Becoming an independent young adult is a key time when many young people with diabetes drift away from regular medical care–at the very stage when, some years after childhood diagnosis, they are at greater risk of developing early signs of diabetic complications (1). It is clear that psychosocial support for young people with diabetes must be not only enduring, but also age-appropriate as they move through the transition from childhood to adolescence and then to young adulthood. The provision of psychosocial support for young people with diabetes, although recognized by international guidelines (2, 3) varies greatly throughout the world. Provision ranges from well-established levels