"Please keep on beating"-Participation in a Creative Workshop Offers Unexpected Benefits to Women With Takotsubo Cardiomyopathy.

Takotsubo cardiomyopathy (TCM) or "broken heart syndrome" is a rare condition that is more common in women than men, particularly those who are postmenopausal. It mimics a myocardial infarction and psychological factors have been implicated in its etiology as well as being consequences of its presentation. As part of a public engagement project we brought together 8 women (of 12 invited) previously diagnosed with TCM to facilitate a discussion, through participation in a creative workshop-based process, about their illness experience, how they made sense of it, and the meaning it had for them in their lives, and to identify areas of unmet need. Through a range of creative activities we identified that participants had high levels of unmet need in terms of information and psychosocial support. All participants enjoyed the creative process and meeting other people with a diagnosis of TCM. The workshop overall was perceived as empowering. Exploring patient narratives during artist-facilitated workshops is one approach for providing the first steps to addressing unmet need, although the importance of ensuring psychological safety cannot be over-stated.

What Arts-and-Health Practices Teach Us About Participation, Re-presentation, and Risk.

This article explores the implications of risk in arts-and-health collaborations that represent illness narratives for the purpose of engaging the public. Based on an artist's, bioengineer's, and health psychologist's reflections from pediatric and adult group workshop practice settings, this article canvasses 8 dimensions of risk that deserve ethical attention.

Interdisciplinarity and Patient Engagement: New Representations of Cardiovascular Anatomy.

Background: This article presents and discusses the genesis, making and public presentation of two artworks by British artist Sofie Layton, namely Blueprints and The Bud, which explore the anatomy of the heart infusing it with experiential and narrative elements. Methods: Artist-led workshops with a range of audiences (cardiac patients, medical staff, medical students, creative professionals, and patient relatives) led to explore narratives and imagery that, in turn, was re-presented in artworks exploring the complexity of the cardiovascular system. Results: While positioning themselves in a long tradition of artistic representations of the heart, often purely anatomical or autobiographical, these artworks stem from a process of patient involvement and participation. Integral to the pieces is an interdisciplinary approach, which is central to arts-and-health collaborations. Conclusions: At a time in which the role of the arts in improving health and wellbeing is increasingly recognised and supported by evidence, these artworks offer an opportunity to reflect not only on ways of representing cardiovascular anatomy, but also on its experiential value and on the important of patient engagement and involvement.

Current and future applications of 3D printing in congenital cardiology and cardiac surgery.

Three-dimensional (3D) printing technology in congenital cardiology and cardiac surgery has experienced a rapid development over the last decade. In presence of complex cardiac and extra-cardiac anatomies, the creation of a physical, patient-specific model is attractive to most clinicians. However, at the present time, there is still a lack of strong scientific evidence of the benefit of 3D models in clinical practice and only qualitative evaluation of the models has been used to investigate their clinical use. 3D models can be printed in rigid or flexible materials, and the original size can be augmented depending on the application the models are needed for. The most common applications of 3D models at present include procedural planning of complex surgical or interventional cases, in vitro simulation for research purposes, training and communication with patients and families. The aim of this pictorial review is to describe the basic principles of this technology and present its current and future applications.

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

The arts can aid the exploration of individual and collective illness narratives, with empowering effects on both patients and caregivers. The artist, partly acting as conduit, can translate and re-present illness experiences into artwork. But how are these translated experiences received by the viewer-and specifically, how does an audience respond to an art installation themed around paediatric heart transplantation and congenital heart disease? The installation, created by British artist Sofie Layton and titled Making the Invisible Visible, was presented at an arts-and-health event. The piece comprised three-dimensional printed medical models of hearts with different congenital defects displayed under bell jars on a stainless steel table reminiscent of the surgical theatre, surrounded by hospital screens. The installation included a soundscape, where the voice of a mother recounting the journey of her son going through heart transplantation was interwoven with the voice of the artist reading medical terminology. A two-part survey was administered to capture viewers' expectations and their response to the piece. Participants (n=125) expected to acquire new knowledge around heart disease, get a glimpse of patients' experiences and be surprised by the work, while after viewing the piece they mostly felt empathy, surprise, emotion and, for some, a degree of anxiety. Viewers found the installation more effective in communicating the experience of heart transplantation than in depicting the complexity of cardiovascular anatomy (p<0.001, z=7.56). Finally, analysis of open-ended feedback highlighted the intimacy of the installation and the privilege viewers felt in sharing a story, particularly in relation to the soundscape, where the connection to the narrative in the piece was reportedly strengthened by the use of sound. In conclusion, an immersive installation including accurate medical details and real stories narrated by patients can lead to an empathic response and an appreciation of the value of illness narratives.

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.