The Caregiving Journey: Arts-Based Methods as Tools for Participatory Co-Design of Health Technologies

Abstract

Being an informal caregiver to a loved one with an illness, disease, or chronic disability is a rewarding but frequently stressful experience. In this design research project, caregivers participated in a half-day workshop to (1) share their caregiving experience, (2) reflect on the potential of a mobile smartphone ‘app’ for carers and (3) co-design this app, as well as in-depth interviews. Our design research process used multiple arts-based methods, including visual experience mapping tools, storytelling, photo-elicitation, documentary photography, cartoons, drawing, and research poetry, to provide rich and empathic insight into daily life as a caregiver and illuminate the potential of technology. Workshop activities included creating a visual collage of lived experience, annotated visual maps illustrating the reality and misconceptions of caregiving, pathways of care, and mapping a day in their life using the visual metaphor of a clock. Carers then trialled and provided feedback on a prototype app, creating a collective map of desired features. This co-design feedback informed the final app design, which was formally launched at a public exhibition showcasing stories collected from our arts and design-led processes. This paper outlines the value of arts and design methods in the design of future health technologies, which provide a critical space for an informed, reflexive, and empathic dialogue about illness and caregiving, resulting in designs that truly met consumer’s needs.