Research Topics

Worldwide, a growing number of young people grow up and reach adulthood with a congenital or childhood-onset chronic condition. This makes young people an increasingly important group of healthcare users with their own specific needs. Growing up and transitioning from childhood to adolescence and young adulthood calls for reaching a balance between the usual developmental tasks and the adaptive tasks presented by the chronic condition. It means also that these young people have to take up self-management. Self-management refers to the “ability to manage the symptoms and the consequences of living with a chronic condition, including treatment, physical, social, and lifestyle changes”. Balancing between different developmental and adaptive tasks is complicated, however, and young people often need tailored support to successfully do so. This chapter addresses research topics considering the needs of young people in transition. Although most of these needs are generic, the specific case of young people growing up with congenital heart disease (CHD) will be highlighted in this chapter. First, the transfer from paediatric to adult care will be considered and then the transition from childhood to adulthood. The chapter concludes with an overview of the research topics.