97 Through their lens: exploring womens lived experiences to develop a chatbot patient decision aid for endometriosis using photovoice
Year: 2026
Type: conference-paper
Abstract: Background Endometriosis is a chronic, inflammatory disease affecting ~10% of reproductive-age women and causing significant physical, psychological, and social burdens. Its diverse symptoms and treatment algorithms require women to navigate multiple, complex, preference-sensitive decisions. Shared decision-making supported by Patient Decision Aids (PtDAs) can improve knowledge, reduce decisional conflict, and support value-aligned choices. However, effective PtDAs require a rigorous understanding of patients’ lived experience, information, and decision needs. Using a cross-sectional qualitative design grounded in a community-based participatory approach, this study aims to explore women’s information and decision support needs related to living with endometriosis. Methods This study uses Photovoice, a participatory method placing cameras in participants’ hands, to explore women’s experiences of living with endometriosis. After consent, 20 participants divided into two groups will attend a 90-minute Photovoice training session co-facilitated by a patient partner. Participants will then document four weeks of daily experiences, roughly corresponding to one menstrual cycle, using a disposable camera and reflective notebook. They will select 3–5 photos to represent their perspectives, to be discussed in a 90-minute community meeting guided by a semi-structured interview schedule. Sessions will be in-person when feasible, with online options if needed. The primary endpoint is the identification, characterization, and thematic mapping of participants’ information and decision support needs. Data, including photos, narratives, notebooks, field notes, and transcripts, will be analyzed using a two-step thematic approach in MAXQDA with triangulation by a patient partner. The study follows COREQ standards, GRIPP 2 and incorporates reflexive practices in line with AMEE recommendations. A public exhibition of selected photos will be co-organised with the consent of the participants. Results Data collection is planned for February 2026. Expected themes include symptom burden, barriers to care navigation, contextual influences on decision-making, and unmet informational and decisional support needs related to pain, fertility, and self-management. Discussion By positioning women as co-creators of knowledge, the study empowers participants and ensures PtDAs reflect lived experiences and equity considerations. Findings will guide PtDA prototype development and strengthen shared decision-making in endometriosis care.
Language: English
Subfield: Sociology and Political Science
Field: Social Sciences
Domain: Social Sciences
Open Access status: gold
OpenAlex ID: W7225867965
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