Information Needs of Culturally and Linguistically Diverse Women with Endometriosis in Australia: A Qualitative Study

TL;DR

This study explores the information needs of culturally and linguistically diverse women in Australia with endometriosis to improve health education and support.

Contribution

The study identifies specific information needs and preferences of CALD women with endometriosis, which can guide the development of tailored health resources.

Findings

CALD women with endometriosis need information on disease causes, symptoms, and management.

Preferred resources include simple language, visual elements, and interactive formats like webinars.

Inclusion of lived experience stories is recommended to enhance understanding and engagement.

Abstract

Public health relevance—How does this work relate to a public health issue?
Endometriosis is one of the most common gynaecological disorders, affecting approximately one in seven women in Australia.Endometriosis has substantial personal, societal, and economic impacts.

Endometriosis is one of the most common gynaecological disorders, affecting approximately one in seven women in Australia.

Endometriosis has substantial personal, societal, and economic impacts.

Public health significance—Why is this work of significance to public health?
Accessible and tailored health information is essential for informed decision-making and patient empowerment.Understanding the information needs and preferences of CALD women is necessary to provide adequate informational support.

Accessible and tailored health information is essential for informed decision-making and patient empowerment.

Understanding the information needs and preferences of CALD women is necessary to provide adequate informational support.

Public health implications—What are the key implications or messages for practitioners, policy makers and/or researchers in public health?
Health education should focus on disease pathogenesis, including the causes, symptoms, and progression of endometriosis, as well as disease management.Information resources need to be easy to understand, with minimal text and added visual elements, and should include examples of lived experience with endometriosis. Webinars on endometriosis were requested as an interactive format that allows women to ask questions.

Health education should focus on disease pathogenesis, including the causes, symptoms, and progression of endometriosis, as well as disease management.

Information resources need to be easy to understand, with minimal text and added visual elements, and should include examples of lived experience with endometriosis. Webinars on endometriosis were requested as an interactive format that allows women to ask questions.

Culturally and linguistically diverse (CALD) women make up an important population of women with endometriosis in Australia. However, their experiences with the condition, particularly regarding their experiences with information on endometriosis, have not yet been studied. This qualitative descriptive study aimed to explore the information needs and preferences of CALD women living with endometriosis. A qualitative descriptive study, using semi-structured individual interviews with 11 CALD women aged 23–46 from Victoria, Australia, was undertaken. The data were analysed using thematic analysis. The women’s information needs focused on disease pathogenesis—including causes, symptoms, and progression—as well as disease management, such as medication and surgery, lifestyle factors, fertility treatment, and mental health support. The women suggested resources should be easy to understand, written in simple English, with minimal text and added visual elements. Stories from other women with endometriosis were also recommended, as were interactive formats that enable women to ask questions. While the women primarily preferred written information, they also welcomed formats such as webinars or workshops. This study highlights a need for improved information for CALD women with endometriosis. Information resources should be designed to meet women’s needs in both content and delivery.

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