Care in Pieces

Unpacking Experiences of Using LLMs for Self-management of Endometriosis and PCOS

Conference Paper (2026)
Author(s)

Ariane Lucchini (TU Delft - Industrial Design Engineering)

Catalina Lagos Rojas (TU Delft - Industrial Design Engineering)

Alessandro Bozzon (TU Delft - Industrial Design Engineering)

Sara Colombo (TU Delft - Industrial Design Engineering)

Research Group
Knowledge and Intelligence Design
DOI related publication
https://doi.org/10.1145/3800645.3812813 Final published version
More Info
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Publication Year
2026
Language
English
Research Group
Knowledge and Intelligence Design
Pages (from-to)
1734-1748
Publisher
ACM
ISBN (electronic)
9798400725630
Event
ACM conference on Designing Interactive Systems, DIS 2026 (2026-06-13 - 2026-06-17), Singapore, Singapore
Page Views
79
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Abstract

Women with endometriosis and Polycystic Ovary Syndrome (PCOS) require individualized, long-term, holistic care, yet systemic healthcare barriers leave many managing independently. Increasingly, women are turning to Large Language Models (LLMs), such as ChatGPT, for support in self-management. However, little is understood about how people use and experience LLMs in this context. We employed a feminist participatory approach to collective knowledge production and situated expertise to explore participants' motivations and expectations in using LLMs for self-management. We engaged in co-annotation of personal ChatGPT conversations and collage-making sessions with 8 women living with endometriosis and/or PCOS, centering their lived experiences. We surfaced the layered experiences of self-managing endometriosis and/or PCOS with LLMs and how these compare and contrast with their ideal visions of care. We contribute empirical insights and design considerations for LLM systems providing support in this context.