Medical performance and the 'inaccessible' experience of illness: an exploratory study

Area of Science:

• Medical humanities
• Performing arts
• Patient experience research

Background:

• Acute leukemia treatment, such as hematopoietic stem-cell transplant (HSCT), presents complex physical and emotional challenges.
• The subjective experience of serious illness is often difficult to articulate and may lead to patient isolation.

Purpose of the Study:

• To explore audience and stakeholder responses to "bloodlines," a medical performance about HSCT for acute leukemia.
• To investigate how interdisciplinary artistic collaborations can represent complex illness narratives.
• To assess the potential benefits of such performances for patient emotional recovery.

Main Methods:

• Collected 147 audience questionnaires across seven performances.
• Conducted 10 in-depth interviews with former patients, family members, and medical practitioners.
• Analyzed responses to understand audience recognition and emotional impact.

Main Results:

• Performances effectively conveyed "inaccessible" illness experiences, resonating with audience members.
• The play successfully integrated objective medical perspectives with subjective emotional experiences of leukemia.
• Audience members with personal experience found the performance familiar and emotionally affecting.

Conclusions:

• Interdisciplinary medical performances can make complex illness experiences relatable and emotionally impactful.
• Such performances may aid the emotional recovery of survivors by validating their experiences and reducing feelings of isolation.
• Artistic representations can challenge the separation between objective medical realities and subjective patient feelings.