Chronic disease and treatment by the adolescent's view: Considerations from a life story

Abstract

Introduction: Chronic diseases have increased worldwide, demanding more and more the understanding of their complexity and the particularities of each life cycle. Chronic illness in adolescence, in turn, presents challenges given the issues specific to this phase of life. Objective: To know how an adolescent understands the process of illness and hospitalization throughout his life trajectory and how the illness permeates his daily life. Method: An exploratory, descriptive and reflective study was conducted through oral history. The collection took place through an interview with a teenager diagnosed with sickle cell anemia since his childhood. After collecting the oral history, the phases of transcription, textualization, transcreation, and validation were carried out with the participant and, finally, thematic analysis of the story was undertaken. Results: The study identified three main thematic categories: The experience of growing up with illness; impacts of illness on everyday life, and the relationship with the family permeated by chronic disease. The results revealed the experience of a young person facing a life permeated by chronic illness and the life strategies he uses to produce meaning, facing the challenges brought by the demands of permanent care and the conflicts inherent in adolescence. Conclusion: Even though the results are unique, Marvel's story represents in several ways the experience of adolescents with chronic illness, making it possible to understand the impacts of living with chronic illness, the care needs, and restrictions imposed by the illness.