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.
- adolescent health
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Contributors All authors were involved in running the workshops and interpreting workshops’ outcomes. GB drafted the manuscript and all authors contributed to and approved the final version.
Funding This work was supported by a Wellcome Trust Small Arts Award (grant ref. 107175/Z/15/Z) and a Royal Academy of Engineering Ingenious Grant for public engagement (grant ref. ING1415\9\154). The authors also acknowledge the generous support of the Blavatnik Family Foundation and GOSH Arts.
Disclaimer The views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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