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The following is a summary of “Disregarded, devalued and lacking diversity: an exploration into women’s experiences with endometriosis. A systematic review and narrative synthesis of qualitative data,” published in the December 2024 issue of Obstetrics and Gynecology by Cunnington et al.
Endometriosis is a challenging gynecological condition associated with varying cultural perceptions of menstruation and reproduction. However, qualitative research on endometriosis has primarily been focused in high-income, English-speaking countries.
Researchers conducted a retrospective study to update insights on endometriosis experiences and examine improvements in research diversity and socio-cultural reporting.
They searched 6 online databases (PubMed, MEDLINE, PsycINFO, Scopus, Web of Science, and CINAHL) on 27th March 2023 for English, peer-reviewed articles published from January 2013 to March 2023. An updated search was conducted on 24th March 2024 to extend the inclusion date through March 2024. English-language dissertations and thesis were also considered eligible. Studies included in the review explored first-hand experiences of women or individuals assigned female at birth with endometriosis, utilizing qualitative or mixed-method research designs.
The results showed that 26 papers from 22 studies were included. While greater geographic diversity was observed compared to previous reviews, most studies still recruited participants from high-income countries through clinical settings. Thematic analysis using inductive coding highlighted key experiences, particularly around anticipated infertility and positive healthcare interactions, while also providing limited insight into socio-cultural pressures related to endometriosis. Significant gaps in the evidence were found regarding disease coping, partner support, and alternative intimacy strategies. Additionally, participant homogeneity limited the evidence across different sexualities, ages, ethnicities, and socio-economic backgrounds.
Investigators concluded the ongoing lack of medical and social support for sufferers, highlighting the need for future research to address participant diversity, offer comprehensive disease guidance, empower patients in healthcare settings, and enhance healthcare professionals’ knowledge of the disease.
Source: sciencedirect.com/science/article/pii/S294983842400029X
