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.
Keywords: Breathlessness; Cartooning; Patient and public involvement and engagement.
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.
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