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

Abstract

BackgroundAn 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).ObjectiveTo develop a collective narrative ensuing from a creative activity involving adolescents with CHD, in order to explore their health perceptions and expectations.DesignArtist-led workshop process supported by a multidisciplinary team.Setting and participantsYoung 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.MethodsA composite first-person narrative approach was adopted to handle the emerged phenomenological descriptions and creative outputs, in order to shape a unified story.ResultsThe 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 conclusionsExploring 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.

‘Making the Invisible Visible’: an audience response to an art installation representing the complexity of congenital heart disease and heart transplantation

“…At the level of medical language, the voice of the artist (again in the soundtrack) read technical names relating to conditions, medications and devices that pertain to the world being represented, and these were subtly echoed on the voiles of the hospital screens surrounding the table (figure 1). By creating such a layered landscape and having previously worked with patients and families in a participative manner,6 18 the artist essentially mediated the reality of those patients and those families, representing it as something new, different, beautiful, yet faithful to the underlying narrative and accurate with regard to the medical condition.…”

“…The installation, titled Making the Invisible Visible , was created by artist Sofie Layton in 2015–2016 during a 1 year residency at Great Ormond Street Hospital for Children in London. Stemming from participatory work undertaken by the artist and the team,6 18 the piece explored the experience of living with congenital heart disease and of undergoing heart transplantation, from the perspective of the patients and their families. The artist created a landscape of heart models, which were 1:1 replicas of the hearts of patients with different types of congenital heart disease (including tetralogy of Fallot, total anomalous pulmonary venous drainage, congenital aortic stenosis, transposition of the great arteries and hypoplastic left heart syndrome).…”

Enhancing the collective, protecting the personal: the valuable role of composite narratives in medical education research

“…It indicates the composite-informant in the first-person sense as someone who typifies the general experience within a living and situated context.’ [ 18 , p. 2–3] Biglino et al. [ 37 ] ‘The composite first-person narrative is a reflective story and results in a representation of the phenomenon amalgamating the voices of multiple participants … A composite approach incorporating narratives unearthed through formative research allows the researchers to use factually realistic details and shape a unified story’ [ 37 , p. 3]. Composite life history/composite life story Taber [ 38 ] “I endeavoured to create a story that would highlight important aspects of each woman’s life as relates to the themes common to each, thus combining paradigmatic processes focused on common experiences and narrative processes focused on individual stories .…”

“…The construction of composite narratives as a research output has been employed by researchers using a variety of qualitative approaches and methodologies (including phenomenology, ethnography, narrative research and grounded theory) and a range of methods of data collection such as interviews [ 8 , 23 , 36 , 39 ], written biographies and autoethnography [ 8 ], creative writing and artwork [ 37 ], photographs and field notes [ 42 , 43 ], and audio recordings of workshops [ 37 ]. Composite narratives can form one part of the outputs of a study [ 11 , 18 ] or be the main focus of the data [ 8 , 37 , 38 ].…”

“…Composite narratives can be used either as a methodological approach integral to the research design, analysis and outputs [ 8 , 37 ], or as a vehicle for presentation of research outputs which may be decided on after completion of the initial analysis [ 11 , 18 , 23 , 39 ]. The methodological approach and philosophical underpinnings of the research influence the form of the composite narrative constructed from the data.…”