Online comic-based art workshops as an innovative patient and public involvement and engagement approach for people with chronic breathlessness

Abstract

Plain English summary Talking about breathlessness can be difficult and cause feelings of anxiety. Involving people with breathlessness in research activities can also be challenging. Research contexts can make people feel uncomfortable as they may struggle to understand and feel like they don’t belong. Comic-based illustration (cartooning) offers an opportunity to communicate in a different way. Cartooning was used with members of Breathe Easy Darlington, a support group for people with breathlessness, as a way of helping the research team understand how breathlessness impacts daily lives. Five 90-min cartooning workshops were delivered online and involved 5–10 Breathe Easy members per session. The sessions were led by a professional cartoonist whilst the research team facilitated discussions about breathlessness and related issues. The experience of living with breathlessness was illustrated via cartoon characters and ideas were explored through conversations about the illustrations. People found cartooning fun and sharing the experience with the research team helped them to become part of an existing group who will support a long-term research project directly impacting research investigating balance in people with lung disease. The Breathe Easy members were able to tell their stories via illustrations allowing the research team an insight into different aspects of living with breathlessness. The illustrations showed characters leaning against trees and chairs, sweating and sitting down. The need for physical support caused embarrassment, while people struggled to appear “normal”. Conversations about the illustrations revealed that the idea of “balance” aligns with a loss of control, disorientation, and unsteadiness which causes intense fear and shame.

Keywords

• Breathlessness
• Cartooning
• Patient and public involvement and engagement