Fortune favours the brave: composite first-person narrative of adolescents with congenital heart disease

BACKGROUND: An interdisciplinary framework including a narrative element could allow addressing lack of awareness or excessive anxieties and teasing out divergences between patients’ health status and their expectations. This could be particularly relevant for adolescents with congenital heart disease (CHD). OBJECTIVE: To develop a collective narrative ensuing from a creative activity involving adolescents with CHD, in order to explore their health perceptions and expectations. DESIGN: Artist-led workshop process supported by a multidisciplinary team. SETTING AND PARTICIPANTS: Young people with CHD (n=5, age 17–18 years, two men) were involved in the creative process, which encouraged them, over two sessions, to elaborate imagery relating to their uniqueness as individuals and their hearts. On top of creative activities (including self-portraits, embossing, body mapping and creative writing), participants were also shown their hearts in the form of cardiovascular MRIs and three-dimensional (3D) models manufactured by means of 3D printing. METHODS: A composite first-person narrative approach was adopted to handle the emerged phenomenological descriptions and creative outputs, in order to shape a unified story. RESULTS: The composite first-person narrative highlighted themes central to the patients, including their interpretation of medical references, their resilience and their awareness of anatomical complexity. DISCUSSION AND CONCLUSIONS: Exploring the narrative of adolescents with CHD can offer unique insight into the way they view their hearts at a crucial stage of their care. An artist-led creative workshop supported by a multidisciplinary team can be a valuable approach to collect such narratives from patients and begin exploring them.