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

Author:

Wray Jo12ORCID,Layton Sofie3,Vaccarella Maria4,Bucciarelli-Ducci Chiara56,Biglino Giovanni78ORCID

Affiliation:

1. Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID), Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK

2. NIHR Great Ormond Street Hospital Biomedical Research Centre, London, UK

3. Royal College of Art, London, UK

4. Department of English, University of Bristol, Bristol, UK

5. Royal Brompton and Harefield Hospitals, Guys’ and St Thomas’ NHS Trust, London, UK

6. School of Biomedical Engineering and Imaging Sciences, Faculty of Life Sciences and Medicine, King's College University, London, UK

7. Bristol Medical School, University of Bristol, Bristol, UK

8. National Heart and Lung Institute, Imperial College London, London, UK

Abstract

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.

Funder

Brigstow Institute

Publisher

SAGE Publications

Subject

Health Policy,Health (social science),Leadership and Management

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