Rethinking Lived Experience in Chronic Illness: Navigating Bodily Doubt with Consumer Technology in Atrial Fibrillation Self-Care
Rachel Keys, Paul Marshall, Graham Stuart, Aisling Ann O'Kane
Abstract
Consumer technology is increasingly used to support the self-care of atrial fibrillation (AF), a chronic heart condition that affects physical, emotional, and mental health due to its unpredictability, symptoms, and complications. Through interviews with 29 adults self-tracking while living with AF, we found that consumer technology enabled participants to outsource bodily awareness to their ’digitised heart,’ facilitating innovative pill-in-pocket interventions and empowering negotiation in shared decision-making. Drawing on phenomenology, we introduce ’Bodily Doubt’ to explain how uncertainty about the body shapes the use of technology in chronic illness and how the use of technology influences uncertainty. Technology mediates ’Bodily Doubt’ both by providing reassurance and exacerbating it, particularly when technology fails to adapt to disease progression. Our findings have implications for understanding how technology influences the lived experience of illness, challenging experiential concepts of lived experience in self-tracking and design that foregrounds the experience of the lived body.
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