Heart at the center of life: an in-depth examination of the experiences in the life journeys of adolescents diagnosed with congenital heart disease

Abstract

Background: The experiences and needs of adolescents undergo significant changes due to the rapid physiological, psychological, and social transformations that occur during this period. Examining the experiences of adolescents with chronic diseases throughout their life journeys will help to identify and meet their needs. This study aims to contribute to the literature gap by focusing on the experiences of adolescents with congenital heart disease (CHD) during their life journey. Methods: This qualitative study included 17 adolescents diagnosed with CHD and was conducted in two hospitals between January and November 2023. Data collection included face-to-face semi-structured interviews with participants, while analysis was conducted using MAXQDA software. Results: The findings revealed three main themes describing the experiences in the life journeys of adolescents with CHD. These are the Emotional Journey: Remembering the Past and Persoal Challenges;the Health Journey: Attitudes of Health Professionals and Information Sharing;and the Social Journey: Relationships with peers, teachers, and family members. Conclusion: This study provides valuable insights into the experiences of adolescents living with CHD and highlights the emotional, health, and social challenges they face. Application to practice: The study suggests that healthcare providers should prioritize building solid relationships with adolescents with CHD, involving them in decision-making and meeting their emotional needs. Public awareness about CHD should also be increased to reduce stigma. A multidisciplinary approach is crucial to optimize health outcomes and quality of life for adolescents with CHD.