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

Abstract

Abstract Background Talking about breathlessness can be emotionally challenging. People can feel a sense of illegitimacy and discomfort in some research contexts. Comic-based illustration (cartooning) offers an opportunity to communicate in a more creative and inclusive way. We used cartooning in patient and public involvement and engagement (PPIE) work to explore symptoms of breathlessness and their impact on peoples’ everyday lives. Main body Five, 90-min cartooning workshops were delivered online to members of Breathe Easy Darlington (UK). The workshop series involved 5–10 Breathe Easy members and were facilitated by a professional cartoonist supported by three researchers. The experience of living with breathlessness was represented via illustrations of cartoon characters and ideas explored in subsequent conversations. Cartooning was fun and the majority found it a nostalgic experience. Sharing the experience helped the research team develop new understandings of breathlessness and fostered relationships with the Breathe Easy members. The illustrations showed characters leaning against objects, sweating and sitting down, demonstrating living with the sensation of not being in control. Conclusion Comic-based art, as a fun and innovative PPIE approach. It facilitated the research team becoming embedded in an existing group who will act as PPIE members on a long-term research programme. Illustrations enabled storytelling and fostered novel insights into the lived experiences of people with breathlessness including sensations of a loss of control, disorientation, and unsteadiness. This will impact on work investigating balance in people with chronic obstructive pulmonary disease. This model has potential to be applied in a range of PPIE and research contexts.