Journal of Patient Experience (Jun 2023)

“Please keep on beating”—Participation in a Creative Workshop Offers Unexpected Benefits to Women With Takotsubo Cardiomyopathy

  • Jo Wray PhD,
  • Sofie Layton MRes,
  • Maria Vaccarella PhD,
  • Chiara Bucciarelli-Ducci MD, PhD,
  • Giovanni Biglino PhD

DOI
https://doi.org/10.1177/23743735231151765
Journal volume & issue
Vol. 10

Abstract

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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.