Information-Seeking Behaviours of CALD Women with Endometriosis in Australia: A Qualitative Study

Endometriosis affects one in seven women in Australia and is a significant public health concern. Access to appropriate health information is essential for informed decision-making and quality of life, especially for culturally and linguistically diverse (CALD) women who may face additional communication and health literacy barriers. This study explored the information-seeking behaviours and experiences of CALD women living with endometriosis using semi-structured interviews. Through convenience and snowball sampling via social media, eleven women were recruited. Data were analysed using thematic analysis. The results showed that although women often did not view their cultural background as influential, taboos and stigma can shape information-seeking behaviours. Women primarily relied on healthcare professionals, online resources, and other women with endometriosis as information resources. Healthcare professionals were appreciated for providing tailored information, but some were perceived to have limited knowledge of endometriosis, reducing their usefulness. Online information was abundant and easily accessible but often overwhelming and difficult to navigate. Information from other women with lived experience provided both practical insights and validation, though participants recognised its limited transferability to their own circumstances. These findings highlight the need for information pathways, including better patient education through healthcare providers, as well as accessible and evidence-based online resources.