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However, where the condition is complex and poorly understood, this can involve extensive \u201cpatient work\u201d to locate, interpret and test the information available. The overall purpose of this study was to investigate how women with polycystic ovary syndrome (PCOS) across two healthcare systems engage with online health resources and social media to better understand this complex and poorly understood lifelong endocrine disorder.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A semi-structured interview study was conducted with women from the US (<jats:inline-formula><jats:alternatives><jats:tex-math>$$N=8$$<\/jats:tex-math><mml:math xmlns:mml=\"http:\/\/www.w3.org\/1998\/Math\/MathML\"><mml:mrow><mml:mi>N<\/mml:mi><mml:mo>=<\/mml:mo><mml:mn>8<\/mml:mn><\/mml:mrow><\/mml:math><\/jats:alternatives><\/jats:inline-formula>) and UK (<jats:inline-formula><jats:alternatives><jats:tex-math>$$N=7$$<\/jats:tex-math><mml:math xmlns:mml=\"http:\/\/www.w3.org\/1998\/Math\/MathML\"><mml:mrow><mml:mi>N<\/mml:mi><mml:mo>=<\/mml:mo><mml:mn>7<\/mml:mn><\/mml:mrow><\/mml:math><\/jats:alternatives><\/jats:inline-formula>) who had been diagnosed with PCOS within the previous five years. Transcribed data was analysed using a reflexive thematic analysis method.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>We highlight the information needs and information-seeking strategies women use to make sense of how PCOS affects them, to gain emotional support, and to help them find an effective treatment. We also show how women with PCOS use online health and social media resources to compare themselves to women they view as \u201cnormal\u201d and other women with PCOS, to find their sense of \u201cnormal for me\u201d along a spectrum of this disorder.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>We draw on previous models of sense-making and finding normal for other complex and sensitive health conditions to capture the nuances of making sense of PCOS. We also discuss implications for the design and use of social media to support people managing PCOS.<\/jats:p><\/jats:sec>","DOI":"10.1186\/s12905-024-02993-5","type":"journal-article","created":{"date-parts":[[2024,3,5]],"date-time":"2024-03-05T07:01:58Z","timestamp":1709622118000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":22,"title":["Women\u2019s use of online health and social media resources to make sense of their polycystic ovary syndrome (PCOS) diagnosis: a qualitative study"],"prefix":"10.1186","volume":"24","author":[{"given":"Julia","family":"Gomula","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mark","family":"Warner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ann","family":"Blandford","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,3,5]]},"reference":[{"issue":"12","key":"2993_CR1","doi-asserted-by":"publisher","first-page":"2841","DOI":"10.1093\/humrep\/dew218","volume":"31","author":"G Bozdag","year":"2016","unstructured":"Bozdag G, Mumusoglu S, Zengin D, Karabulut E, Yildiz BO. 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