Growing up with a Chronic Condition

Abstract

Becoming an adult often proves extra challenging for those who grow up with chronic conditions, because adaptive tasks related to living with a chronic condition can clash with normal developmental milestones. Finding a good balance and integrating these tasks in daily life is also referred to as self-management. This thesis deals with three major themes. First, the concept of self-management and self-management support in current health care for young people with chronic conditions is explored. Then, the development of self-management skills, and what factors may influence this process in young people with chronic conditions are addressed. Finally, the effectiveness of self-management interventions for young people with chronic conditions is studied. Self-management support for young people with chronic condition should consider developmental trajectories from childhood into adolescence and young adulthood. This includes attention for medical, role and emotion management, for shifting parent-child roles, and for the coordination of different self-management tasks. Self-management support should be oriented towards facilitating an environment in which young people can learn from others and ‘master through experience’. A better understanding of the effects of and working elements in self-management interventions could be gained from evaluation studies that adopt a mixed-methods approach, give detailed intervention descriptions and present information about the context in which interventions take place.