It Is a Life Journey: A Roadmap of Teens With Chronic Diseases in Transitioning to Independence.

INTRODUCTION

Adolescents with chronic diseases have to cope with a number of challenges in their transition to independence and need to learn self-management. The purpose of this study was to understand the life journey of adolescents and their caregivers.

METHOD: Face-to-face interviews were conducted with 13 adolescents with chronic diseases (e.g., type 1 diabetes, cystic fibrosis, attention deficit hyperactivity disorder, epilepsy) and 13 caregivers (N = 26). Verbal methods were complemented with visual materials. Behavioral models and grounded theory principles guided the analysis of the data.

RESULTS

Participants were grouped according to an "archetype" based on the strategy they adopted to manage their chronic diseases. A life journey map was developed having the stages of transition.

DISCUSSION: This study proposed a new perspective to the life journey, transition stages, and personal archetypes from a patient-centered approach. We argued the need of a multidimensional approach and outlined the differences of archetypes and transition stages.