{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,1]],"date-time":"2026-06-01T12:43:40Z","timestamp":1780317820398,"version":"3.54.1"},"reference-count":46,"publisher":"Public Library of Science (PLoS)","issue":"9","license":[{"start":{"date-parts":[[2023,9,8]],"date-time":"2023-09-08T00:00:00Z","timestamp":1694131200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100010052","name":"Northumbria University","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100010052","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"<jats:p>Sexual dysfunction is a common experience for women with the autoimmune rheumatic disease, Sj\u00f6gren\u2019s syndrome (SS); however, the lived experience of how the disease affects sexual functioning and the sexual environment remains unexplored. This qualitative study explores the conversations pertaining to female sexual function and the sexual environment that individuals with SS have on an internet forum. Qualitative data posted on one publicly accessible, worldwide, internet forum was extracted using an automated web scraping tool. A total of 247,694 posts across 23,382 threads were scraped from the forum in July 2019 and June 2022 (from the United Kingdom). A predetermined and theoretically informed keyword search strategy was used to screen the captured data for content relevant to the study aim. The dataset was cleaned to remove duplication and identifying information and screened for topic relevance. The Computer-Assisted Qualitative Data Analysis software tool, ATLAS.ti, was used to facilitate the data analysis process. Thematic analysis was conducted on 1443 female-oriented posts, and four key themes were identified: the symptoms of SS and their impact on the sexual environment; the emotional responses that are commonly evoked in response to sexual difficulties; the strategies that users have implemented to manage sexual problems; and the impact that a partner\u2019s behavior may have on the sexual environment. Together these themes provide an insight into the nature of sexual difficulties for females with SS. Our findings provide novel insights to inform clinical discussions between practitioners and patients whilst further outlining the importance of undertaking qualitative research with this population.<\/jats:p>","DOI":"10.1371\/journal.pone.0291422","type":"journal-article","created":{"date-parts":[[2023,9,8]],"date-time":"2023-09-08T17:53:51Z","timestamp":1694195631000},"page":"e0291422","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":1,"title":["A qualitative exploration of internet forum discussions surrounding female sexual function for individuals with Sj\u00f6gren\u2019s syndrome"],"prefix":"10.1371","volume":"18","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9997-6956","authenticated-orcid":true,"given":"Jemma L.","family":"McCready","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristofor","family":"McCarty","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vincent","family":"Deary","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9512-6241","authenticated-orcid":true,"given":"Tracy L.","family":"Collins","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0249-9434","authenticated-orcid":true,"given":"Katie L.","family":"Hackett","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2023,9,8]]},"reference":[{"issue":"1","key":"pone.0291422.ref001","doi-asserted-by":"crossref","first-page":"105","DOI":"10.1016\/j.berh.2012.01.012","article-title":"Sj\u00f6gren\u2019s syndrome, the old and the new.","volume":"26","author":"Y Peri","year":"2012","journal-title":"Best Pract Res Clin Rheumatol"},{"key":"pone.0291422.ref002","volume-title":"Treasure Island","author":"SE Carsons","year":"2021"},{"issue":"9482","key":"pone.0291422.ref003","doi-asserted-by":"crossref","first-page":"321","DOI":"10.1016\/S0140-6736(05)66990-5","article-title":"Sj\u00f6gren\u2019s syndrome.","volume":"366","author":"RI Fox","year":"2005","journal-title":"The Lancet"},{"issue":"8","key":"pone.0291422.ref004","doi-asserted-by":"crossref","first-page":"670","DOI":"10.1016\/j.autrev.2015.03.008","article-title":"Google-driven search for big data in autoimmune geoepidemiology: analysis of 394,827 patients with systemic autoimmune diseases.","volume":"14","author":"M Ramos-Casals","year":"2015","journal-title":"Autoimmun Rev"},{"issue":"5","key":"pone.0291422.ref005","doi-asserted-by":"crossref","first-page":"350","DOI":"10.1046\/j.1365-2273.2000.00412.x","article-title":"Sj\u00f6gren\u2019s syndrome.","volume":"25","author":"S Sood","year":"2000","journal-title":"Clin Otolaryngol"},{"key":"pone.0291422.ref006","first-page":"185","article-title":"Sj\u00f6gren\u2019s syndrome: Information for patients and professionals","author":"JP van de Merwe","year":"2008","journal-title":"University Medical Center Rotterdam: Erasmus MC"},{"issue":"3","key":"pone.0291422.ref007","doi-asserted-by":"crossref","first-page":"1021","DOI":"10.1093\/rheumatology\/keac457","article-title":"Sexual dysfunction in women with systemic autoimmune rheumatic disorders: a systematic review and meta-analysis.","volume":"62","author":"I Minopoulou","year":"2023","journal-title":"Rheumatol"},{"issue":"8","key":"pone.0291422.ref008","doi-asserted-by":"crossref","first-page":"1427","DOI":"10.3899\/jrheum.141475","article-title":"Quality of sexual life in women with primary Sj\u00f6gren syndrome","volume":"42","author":"R Priori","year":"2015","journal-title":"J Rheumatol"},{"issue":"7","key":"pone.0291422.ref009","doi-asserted-by":"crossref","first-page":"1286","DOI":"10.1093\/rheumatology\/keu522","article-title":"The impact of primary Sj\u00f6gren\u2019s syndrome on female sexual function.","volume":"54","author":"JF van Nimwegen","year":"2015","journal-title":"Rheumatol (Oxford)."},{"issue":"5","key":"pone.0291422.ref010","first-page":"683","article-title":"Gynaecological symptoms and sexual disability in women with primary Sj\u00f6gren\u2019s syndrome and sicca syndrome","volume":"31","author":"S Maddali Bongi","year":"2013","journal-title":"Clin Exp Rheumatol"},{"issue":"3","key":"pone.0291422.ref011","first-page":"210","article-title":"Are the women with Sj\u00f6gren\u2019s Syndrome satisfied with their sexual activity?","volume":"57","author":"H Isik","year":"2017","journal-title":"Rev Bras Reumatol Engl Ed."},{"issue":"4","key":"pone.0291422.ref012","doi-asserted-by":"crossref","first-page":"e010501","DOI":"10.1136\/bmjopen-2015-010501","article-title":"Stroke survivors and their families receive information and support on an individual basis from an online forum: descriptive analysis of a population of 2348 patients and qualitative study of a sample of participants.","volume":"6","author":"A De Simoni","year":"2016","journal-title":"BMJ Open."},{"issue":"6","key":"pone.0291422.ref013","doi-asserted-by":"crossref","first-page":"554","DOI":"10.1521\/aeap.2014.26.6.554","article-title":"Online focus groups as an HIV prevention program for gay, bisexual, and queer adolescent males","volume":"26","author":"ML Ybarra","year":"2014","journal-title":"AIDS Education and Prevention: Official publication of the International Society for AIDS Education"},{"key":"pone.0291422.ref014","doi-asserted-by":"crossref","first-page":"e016814","DOI":"10.1136\/bmjopen-2017-016814","article-title":"Barriers and facilitators to adherence to secondary stroke prevention medications after stroke: analysis of survivors and caregivers views from an online stroke forum","volume":"7","author":"J Jamison","year":"2017","journal-title":"BMJ Open"},{"issue":"9","key":"pone.0291422.ref015","doi-asserted-by":"crossref","first-page":"1245","DOI":"10.1097\/ACM.0000000000000388","article-title":"Standards for reporting qualitative research: a synthesis of recommendations.","volume":"89","author":"BC O\u2019Brien","year":"2014","journal-title":"Academic Medicine."},{"key":"pone.0291422.ref016","doi-asserted-by":"crossref","first-page":"42","DOI":"10.53841\/bpsrep.2021.inf180","volume-title":"BPS Code of Human Research Ethics.","author":"J Oates","year":"2021"},{"issue":"5","key":"pone.0291422.ref017","doi-asserted-by":"crossref","first-page":"706","DOI":"10.1177\/104973201129119398","article-title":"Unsolicited narratives from the internet: a rich source of qualitative data","volume":"11","author":"KM Robinson","year":"2001","journal-title":"Qual Health Res"},{"issue":"7321","key":"pone.0291422.ref018","doi-asserted-by":"crossref","first-page":"1103","DOI":"10.1136\/bmj.323.7321.1103","article-title":"Ethical issues in qualitative research on internet communities","volume":"323","author":"G Eysenbach","year":"2001","journal-title":"BMJ"},{"issue":"11","key":"pone.0291422.ref019","doi-asserted-by":"crossref","first-page":"1632","DOI":"10.1177\/1049732309350879","article-title":"Protecting respondent confidentiality in qualitative research","volume":"19","author":"K. Kaiser","year":"2009","journal-title":"Qual Health Res"},{"issue":"9","key":"pone.0291422.ref020","doi-asserted-by":"crossref","first-page":"708","DOI":"10.1089\/cyber.2012.0334","article-title":"Ethics of social media research: common concerns and practical considerations.","volume":"16","author":"MA Moreno","year":"2013","journal-title":"Cyberpsychol Behav Soc Netw"},{"issue":"3","key":"pone.0291422.ref021","doi-asserted-by":"crossref","first-page":"314","DOI":"10.1080\/14780887.2015.1008909","article-title":"Ethical issues in conducting qualitative research in online communities.","volume":"12","author":"LD Roberts","year":"2015","journal-title":"Qualitative Research in Psychology"},{"issue":"1","key":"pone.0291422.ref022","doi-asserted-by":"crossref","first-page":"76","DOI":"10.1080\/14780887.2018.1475532","article-title":"A practical guide to analyzing online support forums.","volume":"18","author":"RM Smedley","year":"2021","journal-title":"Qualitative Research in Psychology."},{"key":"pone.0291422.ref023","year":"2022","journal-title":"ATLAS.ti Scientific Software Development GmbH [ATLAS.ti 22 Windows]."},{"key":"pone.0291422.ref024","article-title":"EBOOK: introducing qualitative research in psychology","author":"C. Willig","year":"2013","journal-title":"McGraw-Hill Education (UK);"},{"issue":"2","key":"pone.0291422.ref025","doi-asserted-by":"crossref","first-page":"102","DOI":"10.1191\/1478088706qp062oa","article-title":"Giving voice and making sense in interpretative phenomenological analysis.","volume":"3","author":"M Larkin","year":"2006","journal-title":"Qualitative Research in Psychology."},{"issue":"2","key":"pone.0291422.ref026","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using thematic analysis in psychology","volume":"3","author":"V Braun","year":"2006","journal-title":"Qualitative Research in Psychology"},{"issue":"4","key":"pone.0291422.ref027","doi-asserted-by":"crossref","first-page":"589","DOI":"10.1080\/2159676X.2019.1628806","article-title":"Reflecting on reflexive thematic analysis.","volume":"11","author":"V Braun","year":"2019","journal-title":"Qualitative Research in SportExercise and Health"},{"issue":"5","key":"pone.0291422.ref028","doi-asserted-by":"crossref","first-page":"838","DOI":"10.1111\/j.1743-6109.2006.00301.x","article-title":"Cues resulting in desire for sexual activity in women.","volume":"3","author":"K McCall","year":"2006","journal-title":"J Sex Med"},{"issue":"10","key":"pone.0291422.ref029","doi-asserted-by":"crossref","first-page":"2806","DOI":"10.1093\/rheumatology\/keaa017","article-title":"Vaginal dryness in primary Sj\u00f6gren\u2019s syndrome: a histopathological case\u2013control study.","volume":"59","author":"JF van Nimwegen","year":"2020","journal-title":"Rheumatol."},{"issue":"5","key":"pone.0291422.ref030","doi-asserted-by":"crossref","first-page":"707","DOI":"10.1136\/annrheumdis-2018-214404","article-title":"Normal vaginal microbiome in women with primary Sj\u00f6gren\u2019s syndrome-associated vaginal dryness","volume":"78","author":"TA van der Meulen","year":"2019","journal-title":"Ann Rheum Dis"},{"key":"pone.0291422.ref031","author":"MYH Al-Ezzi","year":"2018","journal-title":"The effect of primary sj\u04e7gren\u2019s syndrome on the senses of smell, taste and sexuality in female patients in the UK: impact on quality of life: Queen Mary University of London;"},{"issue":"9","key":"pone.0291422.ref032","doi-asserted-by":"crossref","first-page":"569","DOI":"10.1136\/ard.53.9.569","article-title":"Obstetric and gynaecological profile in patients with primary Sj\u00f6gren\u2019s syndrome","volume":"53","author":"FN Skopouli","year":"1994","journal-title":"Ann Rheum Dis"},{"issue":"9","key":"pone.0291422.ref033","doi-asserted-by":"crossref","first-page":"2032","DOI":"10.1093\/humrep\/deac141","article-title":"Assessing the experience of dyspareunia in the endometriosis population: the Subjective Impact of Dyspareunia Inventory (SIDI).","volume":"37","author":"F Facchin","year":"2022","journal-title":"Hum Reprod"},{"issue":"7","key":"pone.0291422.ref034","doi-asserted-by":"crossref","first-page":"1654","DOI":"10.3390\/cancers13071654","article-title":"Perceptions of Chinese patients treated for gynaecological cancer about sexual health and sexual information provided by healthcare professionals: a qualitative study.","volume":"13","author":"KM Chow","year":"2021","journal-title":"Cancers"},{"issue":"6","key":"pone.0291422.ref035","doi-asserted-by":"crossref","first-page":"456","DOI":"10.1097\/NCC.0b013e3182395401","article-title":"Changes to sexual well-being and intimacy after breast cancer","volume":"35","author":"JM Ussher","year":"2012","journal-title":"Cancer Nurs"},{"issue":"12","key":"pone.0291422.ref036","doi-asserted-by":"crossref","first-page":"1571","DOI":"10.1080\/08870446.2010.533771","article-title":"Perceived partner support and psychosexual adjustment to breast cancer","volume":"26","author":"SW Kinsinger","year":"2011","journal-title":"Psychol Health"},{"issue":"7","key":"pone.0291422.ref037","doi-asserted-by":"crossref","first-page":"882","DOI":"10.1080\/00224499.2019.1568375","article-title":"Couples\u2019 sexual communication and dimensions of sexual function: a meta-analysis.","volume":"56","author":"AB Mallory","year":"2019","journal-title":"J Sex Res."},{"issue":"4","key":"pone.0291422.ref038","doi-asserted-by":"crossref","first-page":"332","DOI":"10.1177\/26318318211047547","article-title":"Quality of marital relationship and sexual interaction in couples with sexual dysfunction: an exploratory study from India","volume":"3","author":"V Manjula","year":"2021","journal-title":"Journal of Psychosexual Health"},{"issue":"11","key":"pone.0291422.ref039","doi-asserted-by":"crossref","first-page":"e48328","DOI":"10.1371\/journal.pone.0048328","article-title":"Is wetter better? An evaluation of over-the-counter personal lubricants for safety and anti-HIV-1 activity","volume":"7","author":"CS Dezzutti","year":"2012","journal-title":"PloS One"},{"issue":"1","key":"pone.0291422.ref040","doi-asserted-by":"crossref","first-page":"63","DOI":"10.1097\/OLQ.0000000000001272","article-title":"Clinical and personal lubricants impact growth of vaginal Lactobacillus species and colonization of vaginal epithelial cells: an in vitro study.","volume":"48","author":"P \u0141aniewski","year":"2021","journal-title":"Sex Transm Dis."},{"issue":"12","key":"pone.0291422.ref041","doi-asserted-by":"crossref","first-page":"2009","DOI":"10.1093\/infdis\/jiz412","article-title":"Personal and clinical vaginal lubricants: impact on local vaginal microenvironment and implications for epithelial cell host response and barrier function","volume":"220","author":"EM Wilkinson","year":"2019","journal-title":"J Infect Dis"},{"issue":"5","key":"pone.0291422.ref042","doi-asserted-by":"crossref","first-page":"589","DOI":"10.1177\/0884217503257142","article-title":"Caring for women living with Sj\u00f6gren\u2019s syndrome.","volume":"32","author":"N. Schoofs","year":"2003","journal-title":"J Obstet Gynecol Neonatal Nurs"},{"issue":"2","key":"pone.0291422.ref043","doi-asserted-by":"crossref","first-page":"95","DOI":"10.1002\/cpp.710","article-title":"Self\u2010management strategies used by \u2018high functioning\u2019 individuals with bipolar disorder: from research to clinical practice.","volume":"18","author":"G Murray","year":"2011","journal-title":"Clin Psychol Psychother."},{"issue":"4","key":"pone.0291422.ref044","doi-asserted-by":"crossref","first-page":"1257","DOI":"10.1002\/pon.4663","article-title":"Sexual function, psychosocial adjustment to illness, and quality of life among Chinese gynaecological cancer survivors","volume":"27","author":"KM Chow","year":"2018","journal-title":"Psycho\u2010Oncology"},{"issue":"1","key":"pone.0291422.ref045","doi-asserted-by":"crossref","first-page":"109","DOI":"10.1111\/jsm.12735","article-title":"The influence of personality and coping on female sexual function: a population survey.","volume":"12","author":"C Crisp","year":"2015","journal-title":"J Sex Med"},{"issue":"9","key":"pone.0291422.ref046","doi-asserted-by":"crossref","first-page":"2351","DOI":"10.1111\/j.1743-6109.2012.02851.x","article-title":"Harmful or helpful: perceived solicitous and facilitative partner responses are differentially associated with pain and sexual satisfaction in women with Provoked Vestibulodynia.","volume":"9","author":"NO Rosen","year":"2012","journal-title":"J Sex Med"}],"container-title":["PLOS ONE"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0291422","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,8]],"date-time":"2023-09-08T17:54:02Z","timestamp":1694195642000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0291422"}},"subtitle":[],"editor":[{"given":"Ka Ming","family":"Chow","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2023,9,8]]},"references-count":46,"journal-issue":{"issue":"9","published-online":{"date-parts":[[2023,9,8]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0291422","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,9,8]]}}}