Background: Long-term, mental well-being of adolescence and young adults diagnosed with venous thromboembolism (VTE) as experienced by the patients has received little attention.
Objective: The purpose of this study was to explore the essential meaning of adolescents' and young adults' lived experiences following VTE to gain an in-depth understanding of their long-term, mental well-being.
Methods: Semistructured interviews were conducted with 12 Danish patients who were diagnosed with VTE in adolescence or young adulthood. Interviews were analyzed according to a phenomenological hermeneutical approach inspired by the French philosopher Paul Ricœur's theory of interpretation.
Results: Four themes emerged. Participants described an experience of a creeping loss of youth immortality, a perception of being different, to live with a body in a state of alarm, and feel symptom management insecurity.
Discussion: Mental well-being of adolescents and young adults diagnosed with VTE is negatively impacted in the long term. Fear of VTE recurrence predominates and is an important source of psychological distress. This study highlights the clinical importance of including the long-term, mental well-being in the overall assessment when developing rehabilitation programs for adolescents and young adults diagnosed with VTE.