Adolescents' Transition to Self-Management of a Chronic Genetic Disorder

Abstract

Self-management of chronic illness requires acquisition of self-care skills such as seeking knowledge, adhering to recommendations, practicing healthy behaviors, and life-long self-surveillance. This article describes the core problem and psychosocial processes by which parents transfer, and children take on, the responsibility for managing a chronic genetic condition. Individuals with Marfan syndrome (MFS), their parents, and health care providers were the sources of empirical data. A sample of 108 providers, parents, and individuals with MFS were recruited through a genetics clinic and the National Marfan Foundation. The core problem of “becoming fit and fitting in” is resolved via concurrent psychosocial processes: shifting perspective, shifting orientation, shifting sphere, shifting ownership, and shifting reasoning. Transition to self-management is more than planning the transfer of services from pediatric to adult care, and involves gradual changes in knowledge, attitudes, and behavior influenced by parents, peers, and health care providers. Transition to self-management is part of an evolving model of participation in life-long surveillance.