Adolescents' and Young Adults' Lived Experiences Following Venous Thromboembolism: "It will always lie in wait".

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.

Living with severe physical impairment, Duchenne's muscular dystrophy and home mechanical ventilation.

AIM: To study life-experiences of people living with Duchenne's muscular dystrophy (DMD), home mechanical ventilation (HMV) and physical impairment. BACKGROUND: Since the introduction of invasive HMV in the late 1980s people with DMD in Denmark live longer and have the experience of adulthood and a high degree of physical dependency. METHOD: Nineteen patients with DMD and invasive HMV were interviewed in 2007. The interviews were recorded, transcribed verbatim and analysed according to a method inspired by Ricoeur's theory of interpretation. FINDINGS: HMV not only extended the participants lifespan, it also gave them the capacity to live an active life. They were totally dependent in everyday living, but in spite of this, they did not see themselves as physically impaired. They realised that there were activities that were physically impossible, but they considered themselves to be just the same person they had always been. This dependency was described as "independent dependency". CONCLUSION: The lived-experience of physical impairment is found to be "independent dependency" in an active life. To solve problems with loneliness, society needs to work with prejudice and misunderstanding and for better physical accessibility to enable full participation.