Abstract
Self-management technologies help patients manage their health and improve autonomy by tracking biomedical data. For people with hormonal chronic conditions, these tools clarify complex, fluctuating symptoms. These technologies often rely on clinical data, overlooking the complexity and context of lived experiences, risking continued healthcare bias. This paper explores the lived experiences of people with chronic hormonal illness through a feminist ethics of care perspective. In collaborative sensemaking workshops, we unveiled how social and political contexts shape these experiences, the implicit politics of what data is valued (and what is not), and the socio-technical framing of self-management tools. Examining the intersections of care, justice, and ethics, we present a map of bias across social, healthcare, and technological contexts and consider how they influence power dynamics and healthcare interventions. Finally, we discuss how designers' engagement with chronic illness patients is an inherently political and relational act and offer suggestions for deeper participation.
Keywords
Feminist Ethics of Care, Self-Management technologies, Chronic Illnesses
DOI
https://doi.org/10.21606/drs.2026.2392
Citation
Antognini, R., Toso, F., Zaga, C., and van der Voort, M. (2026) Care-ful sensemaking: Co-mapping lived experiences and biases in hormonal self-management tools, in Simeone, L., Gray, C. M., Verhoeven, A., de Götzen, A., Bakırlıoğlu, Y., Zohar, H., Stead, M., and Buwert, P. (eds.), DRS2026: Edinburgh, 8–12 June, Edinburgh, United Kingdom. https://doi.org/10.21606/drs.2026.2392
Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License
Included in
Care-ful sensemaking: Co-mapping lived experiences and biases in hormonal self-management tools
Self-management technologies help patients manage their health and improve autonomy by tracking biomedical data. For people with hormonal chronic conditions, these tools clarify complex, fluctuating symptoms. These technologies often rely on clinical data, overlooking the complexity and context of lived experiences, risking continued healthcare bias. This paper explores the lived experiences of people with chronic hormonal illness through a feminist ethics of care perspective. In collaborative sensemaking workshops, we unveiled how social and political contexts shape these experiences, the implicit politics of what data is valued (and what is not), and the socio-technical framing of self-management tools. Examining the intersections of care, justice, and ethics, we present a map of bias across social, healthcare, and technological contexts and consider how they influence power dynamics and healthcare interventions. Finally, we discuss how designers' engagement with chronic illness patients is an inherently political and relational act and offer suggestions for deeper participation.