{"paper_id":"5ecd9c71-3427-4258-8af7-992058113dec","body_text":"eprints@whiterose.ac.uk\nhttps://eprints.whiterose.ac.uk\nUniversities of Leeds, Sheffield and York\nDeposited via The University of Sheffield.\nWhite Rose Research Online URL for this paper:\nhttps://eprints.whiterose.ac.uk/id/eprint/205530/\nVersion: Published Version\nArticle:\nStanek, D.B., Hestbjerg, I., Hansen, K.E. et al. (2023) Not “just a bad period”— The impact\nof a co-created endometriosis social media health campaign: a mixed methods study. \nFrontiers in Communication, 8. 1154297. ISSN: 2297-900X \nhttps://doi.org/10.3389/fcomm.2023.1154297\nReuse \nThis article is distributed under the terms of the Creative Commons Attribution (CC BY) licence. This licence \nallows you to distribute, remix, tweak, and build upon the work, even commercially, as long as you credit the \nauthors for the original work. More information and the full terms of the licence here: \nhttps://creativecommons.org/licenses/ \nTakedown \nIf you consider content in White Rose Research Online to be in breach of UK law, please notify us by \nemailing eprints@whiterose.ac.uk including the URL of the record and the reason for the withdrawal request. \n\nTYPE Original Research\nPUBLISHED /three.tnum/zero.tnum October /two.tnum/zero.tnum/two.tnum/three.tnum\nDOI /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nOPEN ACCESS\nEDITED BY\nAntónio Fernando Coelho,\nUniversity of Porto, Portugal\nREVIEWED BY\nAna Margarida Sardo,\nUniversity of the West of England,\nUnited Kingdom\nGemma Louise Williams,\nSwansea University, United Kingdom\n*CORRESPONDENCE\nDitte Bonde Stanek\ndbs@ph.au.dk\nIda Hestbjerg\nidhe@ph.au.dk\n†These authors have contributed equally to this\nwork and share first authorship\nRECEIVED /three.tnum/one.tnum January /two.tnum/zero.tnum/two.tnum/three.tnum\nACCEPTED /zero.tnum/nine.tnum October /two.tnum/zero.tnum/two.tnum/three.tnum\nPUBLISHED /three.tnum/zero.tnum October /two.tnum/zero.tnum/two.tnum/three.tnum\nCITATION\nStanek DB, Hestbjerg I, Hansen KE,\nT omlinson MK and Kirk UB (/two.tnum/zero.tnum/two.tnum/three.tnum) Not “just a\nbad period”— The impact of a co-created\nendometriosis social media health campaign: a\nmixed methods study.\nFront. Commun. /eight.tnum:/one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum.\ndoi: /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nCOPYRIGHT\n© /two.tnum/zero.tnum/two.tnum/three.tnum Stanek, Hestbjerg, Hansen, T omlinson\nand Kirk. This is an open-access article\ndistributed under the terms of the\nCreative\nCommons Attribution License (CC BY) . The use,\ndistribution or reproduction in other forums is\npermitted, provided the original author(s) and\nthe copyright owner(s) are credited and that\nthe original publication in this journal is cited, in\naccordance with accepted academic practice.\nNo use, distribution or reproduction is\npermitted which does not comply with these\nterms.\nNot “just a bad period”— The\nimpact of a co-created\nendometriosis social media health\ncampaign: a mixed methods study\nDitte Bonde Stanek /one.tnum*†, Ida Hestbjerg /two.tnum*†, Karina Ejgaard Hansen /one.tnum,\nMaria Kathryn Tomlinson/three.tnumand Ulrik Bak Kirk /one.tnum\n/one.tnumDepartment of Public Health, Aarhus University, Aarhus, Den mark, /two.tnumResearch Unit for General Practice,\nAarhus, Denmark, /three.tnumSchool of Journalism, Media and Communication, University of Sheffie ld, Sheffield,\nUnited Kingdom\nObjective: The goal of this study was to evaluate the impact of a visual social\nmedia health campaign. The #/one.tnumin/one.tnum/zero.tnum campaign was co-created by the Danish\nEndometriosis Patient Association and women with endometriosi s.\nMethods: Seven semi-structured interviews were conducted with campaign\nparticipants to evaluate their experience of participating. The in terviews were then\nanalyzed thematically. Social media metrics on the reach of the campaign we re\ngathered to assess how the campaign had performed.\nResults: Seven themes were identified in the interviews: (/one.tnum) Taboo, (/two.tnum) Visibility, (/three.tnum)\nAwareness, (/four.tnum) Acknowledgment, (/five.tnum) Empowerment, (/six.tnum) Patient Experts, and (/seven.tnum)\nCommunity. Throughout the interviews, the women conveyed that they found\ntheir participation in the campaign meaningful, as it contributed t o creating\nawareness and recognition of a disease otherwise surrounded by taboo and\nstigma. Social media metrics show how the #/one.tnumin/one.tnum/zero.tnum campaign reached both people\ninside and outside the endometriosis community. Across the FEM aLe Project’s\nthree social media platforms, /two.tnum/zero.tnum/eight.tnum (/five.tnum/one.tnum./five.tnum%) of engagements were with patients with\nendometriosis, /nine.tnum/six.tnum (/two.tnum/three.tnum./seven.tnum%) were with FEMaLe employees and advisers, /nine.tnum/four.tnum (/two.tnum/three.tnum./three.tnum%)\nwere with the general public, and /six.tnum (/one.tnum./five.tnum%) were with policymakers. In themonth\nthe #/one.tnumin/one.tnum/zero.tnum campaign was released, the FEMaLe Project’s Twitter and Instagram\naccounts had more impressions than almost any other month that year (e xcept\nJanuary on Twitter and November on Instagram). The FEMaLe Project’s Linke dIn\nhad the same number of impressions as in other months.\nDiscussion: The study shows that the #/one.tnumin/one.tnum/zero.tnum social media campaign had an\nimpact on three levels: on an individual level for the participatin g patients, on a\ncommunal level for people with endometriosis, and on a wider societ al level. The\nparticipating patients felt empowered by their involvement wit h the campaign and\nthe act of coming forward. The participants acted on behalf of their commun ity\nof people with endometriosis, in the hopes that it would raise aware ness and\nacknowledgment. In return, the community engaged with the campaign and\nadded significantly to the dissemination of its message. On a soci etal level the\ncampaign has caught particular attention and engagement compared to oth er\nposts made on the same social media accounts. Combining qualitative an d\nquantitative methods, this study has demonstrated that the #/one.tnumin/one.tnum/zero.tnum campaign had\nan impact on three different levels: individual, communal, and societ al. On an\nindividual level the campaign fostered empowerment for the participating women,\nbecause they felt that their participation contributed to making their struggles\nvisible, known, and acknowledged. The participants took part in the camp aign\non behalf of their community of people with endometriosis, in th e hopes that\nFrontiers in Communication /zero.tnum/one.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\ntheir activistic actions would benefit future members of the commun ity. That the\ncampaign resonated with the community is evident by the fact that /five.tnum/one.tnum./five.tnum% (N = /two.tnum/zero.tnum/eight.tnum)\nof the engagement with the campaign was made by members of the communit y.\nAs such, the community was vital for both the creation and the dissemi nation of\nthe campaign. The #/one.tnumin/one.tnum/zero.tnum campaign performed comparatively well withregards\nto creating engagements on social media- not just within the communi ty but also\nin the wider society. While this does not necessarily entail a change in attitude or\nbehavior, it suggests that the co-created and visual nature of th e campaign had\nan impact on the audience.\nKEYWORDS\nvisual representation, social media metrics, pain, epistemol ogical community,\ncommunication, engagement, patient participation, qualit ative method\nIntroduction\nSocial media constitutes a unique arena, where everyone with\ninternet access can easily find, generate, and share content with\nthe world. For many users, it is a common place to seek out\ninformation (\nChen and Wang, 2021). On an individual level, social\nmedia can provide supportive spaces for like-minded people to\nengage with each other. Social media also facilitates the exchange of\ndiscourses and knowledge about potentially sensitive health issues\n(\nZhang et al., 2017 ). However, the ease with which everybody can\nproduce, and post, content can result in an overload of information\nof varying accuracy or even outright misinformation (\nArena et al.,\n2022), creating what is referred to as an infodemic ( King and\nLazard, 2020 ). The inherent risk of misinformation makes it\ndifficult to assess the validity of the content on social media ( Arena\net al., 2022).\nDespite these identified risks, social media continues to be an\nimportant sphere for healthcare communication and an ideal place\nfor activist agendas within the health domain (\nRus and Cameron,\n2016; Stellefson et al., 2020 ; Urban and Holtzman, 2023 ). It is\noften utilized by health organizations to raise awareness, promote\nactions, address health problems, or advocate for change in public\npolicies related to health issues (\nFu and Zhang, 2019 ; Tomlinson,\n2023).\nAn example of this is the endometriosis social media health\ncampaign (#1in10 campaign) by the Danish Endometriosis Patient\nAssociation (DEPA). Endometriosis is a chronic systemic disease\nin which tissue similar to the lining of the uterus grows outside\nof the uterus, typically in the abdominal cavity causing, bleeding,\ninflammation, adhesions, and scar tissue (\nZondervan et al., 2020 ;\nTaylor et al., 2021 ). Endometriosis is estimated to affect one\nin ten women of reproductive age and an unspecified number\nof transgender, genderfluid, and non-binary people globally\n(\nHolowka, 2022). There is, however, still a lack of awareness around\nthis condition, which is accompanied by severe underfunding for\nresearch and innovation as well as very few available treatment\noptions (\nEllis et al., 2022 ). The most common symptom of\nendometriosis is pain, e.g., chronic pelvic pain or pain related to\nmenstruation (\nZondervan et al., 2020 ). Since the bodily sensation\nof pain is inherently difficult to communicate to people who\ndo not experience similar pain sensations, endometriosis is a\npredominantly invisible disease (\nWhelan, 2003 ). Furthermore,\nendometriosis is a relatively unknown disease. This lack of\nawareness, combined with stigma and taboo associated with\nmenstrual health, contribute to an average world-wide diagnostic\ndelay of 7 years (\nZondervan et al., 2020 ).\nIn the summer of 2021, DEPA launched the first series of\nthe #1in10 campaign on Facebook and Instagram. The campaign\nwas led by a Danish journalist, who was herself a patient with\nendometriosis. It was designed as an informational campaign to\nconvey the struggles of living with endometriosis. In the creation\nof the #1in10 campaign, DEPA reached out to their members\nwith endometriosis to engage them in a co-creation process. They\nwere asked to submit a photograph of themselves and formulate\na question based on their own experiences with endometriosis.\nQuestions included: “Why must I live in constant pain?” or “Why is\nmy disease not being taken seriously?” Each social media post then\nconsisted of one photograph, the name and age of the woman in\nthe photograph, and her question (\nFigure 1). Following the first\nrelease of the campaign in 2021, a second series was released\nlater that year, with a total of 25 different patient submissions\nbeing posted.\nIn 2022 the EU-funded Horizon 2020 research and innovation\nproject Finding Endometriosis using Machine Learning (FEMaLe,\nGrant No. 101017562) entered a collaboration with DEPA to\ntranslate 15 of the patient questions into English and visually\nredesign the campaign to fit FEMaLe’s visual identity and guidelines\nfor co-branding (\nFigure 2). It was then promoted through FEMaLe’s\nsocial media accounts on Instagram, Twitter, and LinkedIn, as part\nof the worldwide endometriosis awareness month of March 2022.\nSeveral of the questions in the #1in10 campaign revolve around\nthe patients’ struggles with pain. Pain should be understood\nin accordance with the newest definition by The International\nAssociation for the Study of Pain (IASP): “An unpleasant sensory\nand emotional experience associated with, or resembling that\nassociated with, actual or potential tissue damage” (\nRaja et al., 2020,\np. 2). They add that pain is always a personal experience. Likewise,\nin a study of endometriosis, Whelan states: “Pain is ineffable and\nelusive; it confounds the grasp of language and objectification. As an\nexperience, pain is utterly private and subjective, and, consequently,\nit creates a divide between sufferer and observer” (\nWhelan, 2003 ,\np. 464).\nFrontiers in Communication /zero.tnum/two.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nFIGURE /one.tnum\nThe Danish campaign.\nIn contrast to the IASP definition, the health care system often\napproaches pain from a biomedical point of view ( De Ruddere and\nCraig, 2016; Ilschner et al., 2022 ). This view posits that pain needs\nto be proven “objectively” through psychical findings to be valid\n(\nAtkinson, 1988). Health care professionals often use the Numeric\nRating Scale as a tool to “measure” pain for which patients are\nasked to classify their pain on a scale from 0 to 10 (\nBourdel et al.,\n2014). This is an attempt to objectify the otherwise subjective and\nintangible experience of pain. However, studies show that health\ncare professionals tend to score the patients’ pain lower than the\npatients do themselves (\nRuben et al., 2018 ), which supports the\nclaim that pain is always subjective and cannot be objectified\n(\nRaja et al., 2020 ). The patient’s pain assessment is not always\ndeemed as valid ( Hintz, 2022; Ilschner et al., 2022 ). Indeed, health\ncare professionals tend to believe that patients exaggerate their\nclaims to pain when there are no correlating physical findings\n(\nHintz, 2022 ; Ilschner et al., 2022 ). This is a particular problem\nfor people with endometriosis, because the extent of pathology and\npain experiences rarely match (\nZondervan et al., 2020 ). On top of\nthis problem of communicating and validating pain, people with\nendometriosis face the challenge that pain related to menstruation\nis commonly seen as “normal, ” “harmless, ” and not worthy of\nfurther attention or treatment (\nSeear, 2009). As a result, people with\nendometriosis can feel neglected or even mistreated (Whelan, 2007;\nHudelist et al., 2012).\nVisual tools are especially good for communicating such\ncomplex and intangible concepts as pain as well as creating\nattention and engagement. Therefore, visualizations are used more\nand more in health communication campaigns, such as the\n#1in10 campaign (\nCluley et al., 2021 ; Jarreau et al., 2021 ). Visual\ncommunication takes several forms, but the visual format used in\nhealth communication is often story driven and humanized. This\ncan foster empathy and make the intangible suffering of others\nrelatable (\nAli and Rogers, 2022 ; Bartel, 2022 ). The use of visuals\nhas long served as a method in qualitative research to explore\nthe everyday life of different groups of people, including illness\nexperiences (\nHussain, 2022 ). Photo-elicitation allows patients to\ncontrol how they present themselves and their experiences ( Frith\nand Harcourt, 2007), as was done when the participants were asked\nto photograph themselves, as co-creators of the #1in10 campaign.\nThe campaign can be understood as co-created in the widest sense,\nas two or more people took part in the creative process of designing\nthe campaign (\nSanders and Stappers, 2008 ). The participating\nwomen were involved in the creation of the content of the campaign\nand thereby the expression and message of the campaign. Co-\ncreation may provide the patients with a sense of agency and move\nthem away from the passive sick role (\nPaulovich, 2015). Since they\nhave a unique insight into living with a disease, co-creating a health\ncommunication campaign with patients ensures sustainability of\nthe campaign, the relevance of the campaign to the issues facing\ntheir community, and enhance the likelihood of meaningful impact\n(\nLefebvre et al., 2020).\nThere is a general underlying assumption that utilizing social\nmedia for health promotion effectively increases the likelihood that\naudiences will consequently take action (\nFreeman et al., 2015; Chen\nand Wang, 2021 ). To evaluate engagement with audiences using\nsocial media, three levels can be operationalized, as suggested by\nNeiger et al. (2012):\nFrontiers in Communication /zero.tnum/three.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nFIGURE /two.tnum\nThe English campaign.\n1) Low engagement—users prefer content, e.g., a “like” on\nFacebook, Twitter, Instagram, or LinkedIn.\n2) Medium engagement—users share content to influence\nothers, e.g., retweeting on Twitter, reposting on\nLinkedin, etc.\n3) High engagement—users act or participate in offline\ninterventions upon being exposed to social media campaign\nposts, e.g., donate money, etc.\nHowever, it takes limited effort to engage with a campaign\non Facebook, Twitter, Instagram or LinkedIn, and no direct link\nbetween the amount of likes’ and the likelihood of behavior\nchange has been proven (\nFreeman et al., 2015 ). This phenomenon,\nknown as “slacktivism, ” illustrates that there is often a disconnect\nbetween awareness and offline action (\nGlenn, 2015). Furthermore,\nsocial media has even been criticized for lowering the level of\ncommitment and activity critical for any given campaign’s success\n(\nFreeman et al., 2015).\nConsidering these contrasting perspectives on the potential\nof social media to engender positive health outcomes, Chen\nand Wang (2021) have identified a need for further research\nregarding the evaluation of impact when using social media\nin health interventions. Therefore, by assessing the co-created\n#1in10 campaign, based on visual communication, the aim of the\ncurrent study is to examine how a social media health campaign\ncreates impact.\nMaterials and methods\nDesign\nA mix of qualitative and quantitative methods were used to\nexamine the impact of the campaign.\nQualitative method\nA qualitative approach of individual semi-structured\ninterviews, was chosen to assess the impact of the #1in10\ncampaign for the participants.\nParticipants and procedure\nThe 15 women, who contributed to the English version of the\n#1in10 campaign, were initially invited by DEPA on behalf of the\nresearchers to participate. Researchers then sent out an informed\nconsent form regarding participation by e-mail to interested\nFrontiers in Communication /zero.tnum/four.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nparticipants. Only after having received a signed copy of the\ninformed consent form, a time and date for the interview was\nagreed. All 15 women responded positively to the request of an\ninterview, but only seven returned the signed consent form and\nparticipated in the study. The seven interviews were held during\nNovember and December 2022. They were conducted virtually\nvia an online video connection (Zoom) and lasted between 35\nand 70 min each. With the consent of the participants, interviews\nwere video and audio recorded. The interviews were conducted by\ntwo independent researchers (DS, IH). As Danish was the native\nlanguage of both interviewers and interviewees, the interviews were\nconducted in Danish.\nAt the time of the interview, participants were between 21 and\n49 years of age and had all been diagnosed with endometriosis,\nthough some had been living with the diagnosis for more than\n20 years, while others had only recently been diagnosed. All\nparticipating women had experienced several years of diagnostic\ndelay ranging from two to 17 years from onset of symptoms\nto diagnosis. Details concerning demographics and endometriosis\nhistory of the participants are found in\nTable 1.\nInterviews\nThere were three parts to the interviews. The first part\nof the interviews was phrased as a questionnaire asking basic\ndemographical questions about the women’s age, family situation,\noccupation, etc., with very little room for deviation. The second\nand third parts of the interviews were conducted as semi-\nstructured interviews. Some questions were asked to explore certain\nassumptions about the impact of the campaign. The interviews also\nincluded several open-ended questions, which offered participants\nthe space to direct the interviews in the manner that made the most\nsense for them. This space for improvisation allowed interviewers\nand participants to pursue any new and exciting themes that might\noccur (\nFranks, 2002 ). In the second part, participants were asked\nabout their experiences with endometriosis; their symptomatic\nhistory, their diagnostic journey, and their current condition and\nquality of life. The third part was focused specifically on the\ncampaign and their personal experiences, thoughts, worries, and\nhopes before, during, and following, the release of the campaign\n(\nAppendix 1).\nData analysis\nThe interview recordings were transcribed using an online\nautomated transcriber ( transkriptor.com). As automated\ntranscribers are generally still very insufficient when it comes\nto transcribing the Danish language, it was necessary to manually\nrevise all the transcriptions. The Danish transcripts were then\nsubjected to thematic analysis, using an inductive/deductive hybrid\napproach, as described by\nFereday and Muir-Cochrane (2006). This\napproach followed 6 steps of analysis. In the present analysis, steps\n2 and 3 were merged. The approach is presented as a step-by-step\nprocedure, although the analysis was an iterative process.\nStep 1. Based on the interview guide, an a priori template for\nthe codebook was developed (\nFigure 3).\nTABLE /one.tnumDemographics and endometriosis history.\nParticipants, N = /seven.tnum\nN (%)/Mean (Range)\nAge 38.86 (21–49)\nPlace of residence\nNorth Jutland 1 (14.29%)\nCentral Jutland 5 (71.43%)\nZealand 1 (14.29%)\nBiological children\n0 4 (57.14%)\n1 1 (14.29%)\n2 1 (14.29%)\n3 1 (14.29%)\nOccupation\nFull time or more 2 (28.57%)\nPart time 1 (14.29%)\nFlexi job/rehabilitation 3 (42.86%)\nEnrolled in education 1 (14.29%)\nUnemployed 0 (0%)\nCurrent level of education\nHigh school 1 (14.29%)\nHigher education <3 3 (42.86%)\nHigher education 3–4 years 2 (28.57%)\nHigher education >4 1 (14.29%)\nDiagnostic delay 9.14 (2–17)\nYears since diagnosis 12.71 (1–24)\nHow diagnosis was reached\nSurgery 6 (85.71%)\nUltrasound 1 (14.29%)\nPrevious treatment\nSurgery 7 (100%)\nHormonal treatment 7 (100%)\nPain medication 6 (85.71%)\nPhysical treatment 1 (14.29%)\nPsychological treatment 1 (14.29%)\nAlternative treatment 2 (28.57%)\nCurrent treatment\nNo treatment 1 (14.29%)\nHormonal treatment 2 (28.57%)\nPain medication 4 (57.14%)\nStep 2 and 3. Researchers familiarized themselves with the\ntranscripts. The codebook was tested and\nverified by applying the codes to two of the\nFrontiers in Communication /zero.tnum/five.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nFIGURE /three.tnum\nThematic analysis flow diagram.\ntranscribed interviews. Some of the codes were\ngiven new names, and new codes were added to\nthe codebook.\nStep 4. The transcripts were uploaded to QSR Nvivo 12\n(2022), and the codes were matched with segments\nof data deemed representative. Multiple codes could\nFrontiers in Communication /zero.tnum/six.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nbe matched with the same segment. This stage was\nguided, but not confined, by the preliminary codes.\nDuring the coding of transcripts, inductive codes\nwere assigned to segments of data that described a\nnew theme observed in the text.\nStep 5. Codes were connected as themes and patterns in the\ntranscripts were generated.\nStep 6. Themes were further clustered and previous stages\nwere closely scrutinized to ensure that the generated\nthemes were representative of the initial codes. This\nprocess involved several iterations, before the final\nanalytical themes were agreed.\nFor further details on the process see\nFigure 3.\nQuantitative method\nA quantitative approach was chosen to assess the impact of both\nthe Danish and the following joint English #1in10 campaign(s).\nData were determined using Facebook and Instagram\n“Insights” as well as LinkedIn and Twitter “Analytics, ” both of\nwhich provide aggregated information about user interactions.\nEach social media platform provides different metrics, which is\nwhy data were recorded separately. The definitions of the various\nsocial media metrics are provided in\nTable 2. Metrics for the 37\nFacebook posts and 35 Instagram posts in Danish were collected\non December 16, 2022. Metrics for the 3 LinkedIn posts, the 15\nInstagram posts, and the 14 Twitter posts in English were collected\non December 23, 2022.\nNeiger et al. (2012) proposed stratifying social media\nengagement into three levels. As previously mentioned, however,\nthe third level that\nNeiger et al. (2012) suggests is difficult to\nmeasure because there is no direct link between engagement\non social media and offline interventions. Furthermore, due to\nthe algorithms in use on the different social media platforms, a\n“like” may have the same effect as a “re-post, ” when it comes to\nadvancing exposure. Therefore, in the present study engagement\nwas stratified into two levels in line with\nFreeman et al. (2015): those\nwith low level of online engagement (those passively following\ncontent without further interaction, i.e., “lurking”), and those with\nhigh level of engagement (those interacting with social media\ncampaign materials such as “liking” and posting original content).\nIn addition, the highly engaged online audience of the English\n#1in10 campaign were identified and categorized into four groups:\n“patients, ” “FEMaLe staff and advisers, ” “general public, ” and\n“policymakers.” This was done manually by identifying each person\nand categorizing them based on information available on their\nsocial media accounts.\nStatistics\nDescriptive statistics for each post, e.g., likes, impressions,\ndiscovery, and reach, as well as mean and standard deviations\nper platform were determined using Microsoft Excel version\n16.68 (2022).\nEthics\nThe study was pre-registered at the Danish Data Protection\nAgency through Aarhus University’s internal registration\n(journal number: 2016-051-000001, running number: 2854).\nThe participants signed a consent form informing them of the\npossibility of withdrawal and confidentiality. The consent form was\nprovided by Aarhus University and was aligned with the General\nData Protection Regulation (GDPR) that has been implemented\nin the European Union (\nThe European Parliament The Council of\nthe European Union., 2016; Danish Ministry of Justice, 2018 ).\nIn keeping with the spirit of the campaign, participants’ real\nnames were used when referring directly to a specific person. It\nwas deemed impossible to ensure complete anonymity, as only 15\nwomen participated in the English version of the campaign, which\nmakes it easy to identify any of them. As it is common procedure\nto anonymize all informants in qualitative studies like this, and\nif necessary, even change information such as age and gender, all\nparticipants consented specifically to the use of their name and age\nin this study.\nIn an effort to represent the participants as faithfully and\nrespectfully as possible, all the quotes included in this article were\ntranslated from Danish into English to the best of the authors’\nability. As the main priority was to preserve the substance and\nmessage of the quote, a direct translation was not always achievable.\nResults\nQualitative interviews\nThemes\nMost of the seven participants describe how they faced\nchallenges in getting diagnosed with endometriosis either because\nof misdiagnosis or because their symptoms were dismissed when\nseeking medical assistance. For example, one of the women, Linda\naged 47, visited her general practitioner with severe menstrual pain,\nwhen she was 14 years old and was told: “ Well, it hurts to be\na woman.”\nEvery woman was affected differently by endometriosis in her\neveryday life. Nevertheless, all women experienced some sort of\npain or fatigue either as a result of the disease or because of side\neffects from the prescribed medicines which they have been taking\nmany years. All women described their quality of life as more or less\nreduced compared to not having to live with endometriosis.\nThe thematic analysis resulted in seven overall themes\nemerging from the interviews: (1) Taboo, (2) Visibility, (3)\nAwareness, (4) Acknowledgment, (5) Empowerment, (6) Patient\nExperts, and (7) Community.\nTheme /one.tnum: taboo\nMany of the women felt the need to hide their daily struggles\nwith endometriosis in order to maintain a “normal” life. Ida\nreflected on this point:\nFrontiers in Communication /zero.tnum/seven.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nTABLE /two.tnumDefinition of key terms for Facebook, Instagram, Twitter, and Link edIn, respectively.\nFacebook\nReach: The number of people who saw the #1in10 endometriosis cam paign post at least once.\nThis metric is estimated.\nImpressions: The number of times the #1in10 endometriosis ca mpaign post entered an individual’s screen, which may include mu ltiple views of the post\nby the same people.\nLikes: The amount of people who “liked” the post without leaving a comment.\nInstagram\nReach: The number of people who saw the #1in10 endometriosis cam paign post at least once.\nThis metric is estimated.\nImpressions: The number of times the #1in10 endometriosis ca mpaign post entered an individual’s screen, which may include mu ltiple views of the post\nby the same people.\nLikes: The amount of people who “liked” the post without leaving a comment.\nTwitter\nEngagements: Total number of times someone clicked on a #1in1 0 endometriosis campaign Tweet. This includes clicks anywhere on the Tweet,\nincluding Retweets, replies, follows, likes, links, hashtags, emb edded media, username, profile photo, and/or Tweet expansions.\nImpressions: The number of times the #1in10 endometriosis campaign post entered a person’s screen across any of Twitter’s var ious display surface areas.\nLinkedIn\nThe following analytics are available for LinkedIn members:\nEngagements: The total number of engagements on the #1in10 e ndometriosis campaign post, including reactions, comments, an d reposts.\nDiscovery: Impressions indicate the number of times the #1in 10 endometriosis campaign post was displayed on screen for at leas t 3 seconds. This\nnumber is an estimate and may not be precise.\nImpression demographics: Demographic information about the m embers the post was displayed to.\nNot available after 180 days.\n(LinkedIn, n.d; Meta Business Help Centre, n.d.,a ,n,n; Twitter, n.d.).\n“I’m not the kind of person who complains all the time and\nneeds attention. Often, I have kept quiet when I have felt truly\nawful, because I didn’t want others to see. I don’t know why I\nthink like that. If someone else got migraines or diabetes, people\nwould know that they would be sick from time to time and not\nfind it strange. But if you never let on that you are sick and you\nare frequently unwell, then it is invisible. I feel like it is in some\nways my own fault, that it remains invisible, because I always put\non a smile.”\nSimilarly, Linda talked about how she once tried to keep quiet\nabout her endometriosis because of embarrassment and modesty.\nSeveral women mentioned how endometriosis is difficult to talk\nabout, because it is tightly connected to menstrual health, which\nis a subject that is often surrounded by taboo, stigma, and shame.\nHowever, Linda came to realize that she not only wanted to, but also\nfelt compelled to, overcome this embarrassment so that she neither\ncontributed to the taboo nor the invisibility of the disease:\n“No, I do not want to uphold the shame of it. What if my\nchildren get it?”\nBoth Linda and Ida expressed a wish to break their silence to\nmake the disease more visible.\nWhen they first joined the campaign, some of the women had\nto overcome some initial concerns with regards to engaging in open\ncommunication about such an intimate part of their lives. To Anne,\nit felt slightly like being exposed:\n“It’s obviously very personal. It’s not just a new\nprofile picture.”\nAnne said this was not necessarily a bad feeling, but she was\nvery aware of the intimate nature of what she shared.\nThe feeling of being exposed was reflected in comments the\nwomen received from friends and family after the campaign was\nreleased. Christina said:\n“They said it was really cool to come forward with my\npicture [. . . ] that I had the courage to do so. Many people actually\nconsidered this to be quite brave.”\nThroughout all the interviews, it was frequently clear that\nendometriosis and menstrual health in general could be a\nsensitive topic.\nTheme /two.tnum: visibility\nMost women felt that their disease was made less legitimate,\nbecause people could not see any visible signs. Sofie observed that,\nbefore she underwent surgery and had visible scars to show, people\ndid not recognize how serious and debilitating endometriosis could\nFrontiers in Communication /zero.tnum/eight.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nbe. The scars made her condition tangible. Anne learned, that\nbefore they saw the campaign, people at her job did not know\nshe was sick, even though her pain and fatigue made it impossible\nfor her to work full time. Christina said that it would be easier\nto make people understand and recognize her situation if she had\na broken leg and a cast. Linda’s experience of her disease being\ndisregarded was a main motivational factor for her to participate\nin the campaign:\n“I want to show young people, women in general, that they\nare being taken seriously [when they experience endometriosis\nsymptoms]. Because many of us were simply dismissed. ”\nAlthough it might seem “ scary” (Sofie) to share one’s personal\nmedical history through publicly posting name, age and picture,\nthe women found this aspect of the campaign important,\nand no one had any doubts about committing to doing so.\nKirsten said:\n“Definitely, I found it meaningful to participate. Because I\ncan help provide a face, a picture to make visible that there is\nsomething important, that needs more attention out there.”\nSeveral women thought that the campaign was made\nstronger and more effective by using their pictures and names,\nbecause it made the invisible sensations of pain evident.\nIda said:\n“I think it makes a huge difference to see another human—a\nface. It is easier to sympathize. [. . . ] I think I remember some of\nthe other women from the campaign, because I can recollect their\nfaces. When I first saw it and then read the question, I thought to\nmyself: wow, you can see, how much this affects her. ”\nWhen something is made visible, it is much easier to\nunderstand, relate to and even manage. For Anne, being able to\nsee the physical effects of endometriosis was very important for her\nability to cope with it:\n“I was allowed to see recordings of some of my own\noperations. I needed that; I still do. It is important for my learning\nto cope with the situation and understand, okay, that is not how\nit is supposed to look, something is wrong inside me. It is not just\nsomething in my head, there really is something wrong with me.”\nBy posting visuals that clearly show the struggles and\npossible consequences of having endometriosis, these women\nwere able to challenge common misconceptions, like the belief\nthat endometriosis is “ just a bad period, ” Linda said. Prior to\nparticipating in the campaign, some of the women used their\npersonal Facebook or Instagram account to visually share their\nexperiences with endometriosis. Linda had previously posted a\npicture of her temporary ostomy on Instagram, which she received\nfollowing surgery related to endometriosis. For some women,\nparticipating in the campaign was their first time visually coming\nforward with their own endometriosis experiences on social media.\nThe women shared the hope that making the disease visible would\nlead to more awareness.\nTheme /three.tnum: awareness\nSeveral women stated that this awareness was especially\nimportant for the sake of the next generation of people with\nendometriosis. Linda said:\n“Every time someone hears the word ‘endometriosis’ they\nmight at some point in the future recognize the symptoms, and\nmaybe someone will be diagnosed a little sooner. ”\nAnne expressed a similar sentiment. Even though she did not\nexpect to obtain better treatment for herself, she still found the fight\nfor more awareness to be essential. She said:\n“More awareness can hopefully lead to more and better\ntreatments. It is too late for me, but the women who are born\ntoday, who will experience the first symptoms in around 13 years,\nit is for them that I do it. ”\nIn this quote, Anne indicated that her desire to help the next\ngeneration derived from her own difficult diagnostic journey and\nsubsequent treatment. Christina also highlighted her own bad\nexperience with the health care system as her main motivation\nfor participating and fighting actively for better treatments in the\nfuture. She felt like she has been a “ guinea pig ” throughout her\ntreatment, and she further said:\n“I have experienced going to my doctor and being viewed as\npsychologically unstable, because I have an illness that you can’t\nnecessarily see. I would like to change that perception of women.”\nThe women thus wanted to create more awareness to make\nit easier for lay people, as well as health care professionals, to\nrecognize the symptoms of endometriosis and thereby reach a\ndiagnosis earlier.\nTheme /four.tnum: acknowledgment\nThe women predominantly received reactions from friends\nand family either in-person or on social media regarding their\nparticipation in the campaign. All the reactions were positive.\nSome people told them they were “brave” or “cool” for coming\nforward, or people showed their empathy and willingness to\nlearn more. Anne described this as “ an acknowledging pat on the\nback,” which made her feel seen and grateful. Sofie also pointed\nout that, regardless of how vulnerable it might make one feel,\ncoming forward was needed in order to receive support and\ngenerate recognition.\nThough many women described how they had already learned\nto cope with endometriosis and accepted living with the disease\nprior to participating in the campaign, they expressed that the mere\nexistence of the campaign, as well as their participation in it, had a\nsignificant impact for them. Kirsten said:\n“I have always willingly talked about my condition with\nendometriosis if people asked [. . . ] But participating in this\ncampaign knowing someone kickstarted it to create attention\nmakes me feel more. . . I was about to say justified, when I\ntalk about it. It isn’t something I need to keep a secret or talk\nFrontiers in Communication /zero.tnum/nine.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nabout embarrassingly in short sentences [. . . ] A campaign like\nthis makes me feel like there is something backing it up and\nacknowledging it. More than there was before, for sure. ”\nKirsten addressed how contributing to creating awareness\nthrough participating in the campaign gave her a sense\nof validation.\nTheme /five.tnum: empowerment\nIda said that the increased focus and emphasis on\nendometriosis that was engendered by the realization, and\nsubsequent evaluation, of the #1in10 campaign (alongside her\nown engagement with endometriosis accounts on Instagram)\nenabled her to “ stand taller ” when telling people about the\nchallenges that endometriosis poses in her everyday life. She\nstated that it should not be like this, but her experience was\nthat this increased focus made people take it more seriously.\nChristina had the same realization some years ago. Contributing\nto increasing awareness of endometriosis was important for\nher personal growth and her ability to live a full life with\nendometriosis. On her participation in the #1in10 campaign,\nshe said:\n“[. . . ] The invisible is made visible [. . . ] I think showing the\nother side of the coin maybe just makes you feel more whole. I\nthink many of my friends, also my close friends, have gotten a\ndifferent insight into me and my life. They experienced me as\nenergetic and well-functioning, which might be because I had to\ncompensate for the bad days. So, I think they have gotten the\nwhole Christina.”\nThe existence of the #1in10 campaign and the supportive\nreactions from people who had seen it, gave the participating\nwomen a sense of empowerment.\nTheme /six.tnum: patient experts\nSofie pointed out that the #1in10 campaign was made more\nimpactful because the content was co-produced with patients:\n“[. . . ] It makes it more personal. You get the subjective\nexperience instead of just facts about what it is and how it can\naffect the body. How is it really for those who actually live with\nit? How is it experienced? I think it makes it more tangible for the\nones who don’t live with it. ”\nThe women believed that their subjective experiences provided\nthem with important expertise on endometriosis. This sense of\nbeing experts was strengthened by the fact that the women\nfrequently had to advocate for themselves and act as their own\ndoctor, even though they did not always feel qualified to do so.\nHanne said:\n“When I go to the doctor and say that I am tired, they can’t\ndo anything for me. So, I had to figure out for myself what I could\ndo to get more energy. ”\nKirsten traveled to Romania to undergo surgery that she could\nnot access in Denmark:\n“I find it scary to think that they would have put me on\npublic benefits instead of looking for a method to help me, which\nI then found myself.”\nThe women felt these experiences were the result of a general\nlack of knowledge about endometriosis, limited treatment options,\nand the need for more health care protocols on how to handle\nsymptoms of endometriosis before and after diagnosis. As patients,\nthe women had a bodily knowledge of endometriosis, which they\nfelt made them uniquely capable of producing more knowledge\non the subject, hopefully fostering better treatment options and\nhealth care protocols in the future. Their bodily knowledge was yet\nanother reason behind their belief that the #1in10 campaign was\nstrengthened by their willingness to share their experiences openly\nand honestly.\nTheme /seven.tnum: community\nSeveral women mentioned how their shared bodily\nknowledge of the struggles with endometrioses made them\nunderstand each other in a way that nobody else did.\nChristina said:\n“When you are with your girlfriends. . . They can’t relate to\nall the challenges you have had throughout life. Then it feels\ngood to be able to recognize yourself in someone else who have\neither gone through the same things or are going through the\nsame, right?”\nHanne likewise stated:\n“I have been to an endometriosis lecture, where a person\nsaid, that we all know how much it can hurt to fart. I found that\nfunny, because no one else knows. It really hurts. ”\nTo experience this acceptance from others with the same\nstruggles was very important for many of the women. Especially\nwhen participating in the #1in10 campaign, they found it\ncomforting to know that it was a shared endeavor in which many\nother people with endometriosis participated. Sofie stated that this\nwas crucial for her, when agreeing to participate, and she said that\nit made her feel less exposed. Ida likewise said that it was a nice\nfeeling to stand “ shoulder by shoulder ” in the #1in10 campaign.\nShe felt that the participation of several women in different age\ngroups and with different backgrounds would support the message\nthat endometriosis is something that needs to be taken seriously.\nIda said:\n“You get sad to see how many women who struggle with\nthis and say the same things as you, because when you have\nexperienced it on your own body you know what it entails. So,\nit always hurts seeing a face saying: ‘I feel like this. . . ’ But in a\nway it also makes it easier to handle, as you know you are not\nthe only one feeling like this. ”\nFrontiers in\nCommunication /one.tnum/zero.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nPrior to the #1in10 campaign, all women were in some way\nengaged in endometriosis patient communities with most of them\nbeing active on social media. There are several Danish language\nendometriosis patient communities on Facebook; one of them is\nDEPA ’s account. It varied among the women how active they were\nin such groups and on such platforms. However, they expressed\nthat they tended to use these platforms primarily for seeking\nadvice from people with similar experiences or giving others\nadvice. Some of the women followed endometriosis accounts on\nInstagram, either individual people, who share their experiences,\nor organizations that share facts and relatable content. The women\nexpressed that patient communities, either physical or online, gave\nthem the opportunity to find themselves reflected in someone else\nand gain understanding.\nMost of the women talked about feeling gratitude toward all\nthe women who came before them, and who have previously been\nfighting for awareness and recognition. Anne said:\n“I wanted to give my support. I was so grateful to all the\nothers who had the energy to fight for more awareness. I wanted\nto help. Because we [as a community] depend upon this effort. It\nis necessary if we want things to change. Someone must lead the\nway, and I wanted to go along and contribute with whatever I\ncan. It is important.”\nHanne similarly stated:\n“I thought it was nice that I could contribute. Those in the\npatient association work hard for us. If I could give just a little bit\nback, I wanted to do so. ”\nThis wish to repay the kindness of previous endometriosis\npatients by fighting for better treatment for future patients, was a\ncommon motivational factor for participating in the campaign.\nQuantitative social media campaign\nanalytics\nAnalyses of social media metrics for the different posts are\nshown in\nTables 3–5.\nThe Danish campaign (/two.tnum/zero.tnum/two.tnum/one.tnum)\nThe focus of the Danish #1in10 campaign in autumn 2021 was\non Facebook and Instagram where DEPA had the largest social\nmedia following.\nIn total, 37 #1in10 posts were shared on DEPA ’s Facebook page;\n23 in the first posting round (62%) and 14 in the second (38%).\nThe campaign had a total Facebook reach of 161.279. In the first\nFacebook posting round, it had a reach of 130.275 (80.8%), followed\nby 31.004 (19.2%) in the second round. The campaign on Facebook\nreceived a total of 2.752 likes; 2.209 in the first round (80.3%)\nand 543 in the second (19.7%). The mean reach of the featured\nFacebook posts in the first round (Mean = 5.664; SD = 2.417) was\nmore than two and a half times higher than in the second (Mean =\n2.215; SD = 965), which is in line with the mean number of likes on\nFacebook in the first round (Mean = 96; SD = 42) was almost two\nand a half times higher than in the second (Mean = 39, SD = 14).\nInstagram campaign performance using social media metrics\ndiffered from Facebook data. In total, 35 #1in10 posts were shared\nthrough DEPA ’s Instagram account; 23 (66%) in the first posting\nround and 12 (34%) in the second. The campaign left a total of\n46.044 impressions; 31.024 (67.4%) in the first posting round and\n15.020 (32.6%) in the second. The campaign received a total of\n2.037 likes on Instagram; 1.521 (74.7%) in the first round and\n516 (25.3%) in the second. The mean impressions of the featured\nInstagram posts in the first round (Mean = 1.349; SD = 303) was\nclose to the second (Mean = 1.252; SD = 183), while the mean likes\nin the first round (Mean = 64; SD = 20) was notably higher than in\nthe second (Mean = 47, SD = 9).\nThe mean reach per post was more than three times higher\non Facebook (Mean = 4.358) than Instagram (Mean = 1.315), the\nmean engagements per post on Facebook (Mean = 74) was closer\nto Instagram (Mean = 58).\nThe English campaign (/two.tnum/zero.tnum/two.tnum/two.tnum)\nDuring Endometriosis Awareness Month in March 2022, the\nfocus of the English #1in10 campaign was on Twitter, Instagram,\nand LinkedIn (as the FEMaLe Project has the largest social media\nfollowing on these platforms).\nIn total, 3 #1in10 posts were shared through the FEMaLe\nProject’s LinkedIn profile. The campaign had a total discovery of\n2.716, and the posts received a total of 77 engagements. Each of\nthe featured LinkedIn posts had a mean discovery of 905 (SD =\n487) and a mean engagement of 25 (SD = 11). A total of 15 #1in10\nTweets were posted via the FEMaLe Project’s Twitter account. The\ncampaign left a total of 7.518 impressions, and the posts received\na total of 413 engagements. Statistics revealed a mean impression\nof 501 (SD = 564) and a mean engagement of 28 (SD = 50) of\neach of the featured Tweets. Furthermore, a total of 14 #1in10 posts\nwere shared through the FEMaLe Project’s Instagram profile. The\ncampaign left a total of 3.200 impressions, and the posts received\na total of 241 engagements. Statistics revealed a mean impression\nof 229 (SD = 43) and a mean engagement of 17 (SD = 4) of the\nfeatured Instagram posts. The mean reach per post was highest\non LinkedIn, followed by Twitter, and Instagram, while the mean\nengagement per post was highest on Twitter, closely followed by\nLinkedIn, and Instagram.\nThe #1in10 posts received a total of 404 likes across all social\nmedia platforms. LinkedIn created 77 engagements, out of which\n70 (91%) were likes—and the rest either comments or reposts,\nTwitter performed a total of 413 engagements, out of which 93\n(23%) were likes—and the rest either retweets or replies, and\nInstagram contributed with a total of 241 likes. Instagram was the\nmost successful social media platform with regards to securing high\nlevel of online engagement, when measured by the number of likes\n(60%), followed by Twitter (23%), and LinkedIn (17%).\nAs seen in\nTable 6, engagements across the social media\nplatforms were sorted into four categories: (1) community\nmembers, (2) FEMaLe Project staff, incl. advisers, (3) the general\npublic, and (4) policymakers. Across all platforms the English\n#1in10 campaign engaged patients with endometriosis the most\nFrontiers in Communication /one.tnum/one.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nTABLE /three.tnumMetrics of the #/one.tnumin/one.tnum/zero.tnum endometriosis social media posts on Facebook (in Danish).\nPosts, Round /one.tnumName Age Day Month Year Likes Reach Source\nF1.1 Anne 39 21 June 2021 50 4.267 Facebook\nF1.2 Sofie 20 21 June 2021 28 1.666 Facebook\nF1.3 Signe 44 21 June 2021 48 2.803 Facebook\nF1.4 Hanne 39 28 June 2021 126 8.717 Facebook\nF1.5 Ann 46 28 June 2021 40 2.328 Facebook\nF1.6 Maiken 46 05 July 2021 83 7.164 Facebook\nF1.7 Louise 38 05 July 2021 75 7.876 Facebook\nF1.8 Sara 37 12 July 2021 102 6.684 Facebook\nF1.9 Christina 46 12 July 2021 122 6.937 Facebook\nF1.10 Sabina 35 19 July 2021 96 5.357 Facebook\nF1.11 Maria 46 19 July 2021 68 4.120 Facebook\nF1.12 Helle 38 02 August 2021 50 2.921 Facebook\nF1.13 Linda 44 02 August 2021 41 2.427 Facebook\nF1.14 Maria 32 09 August 2021 129 9.384 Facebook\nF1.15 Wicki 51 09 August 2021 54 3.549 Facebook\nF1.16 Jeanett 40 16 August 2021 173 8.171 Facebook\nF1.17 Heidi 44 16 August 2021 105 4.399 Facebook\nF1.18 Carina 32 23 August 2021 132 6.236 Facebook\nF1.19 Tine 37 23 August 2021 134 9.918 Facebook\nF1.20 Line 25 30 August 2021 152 7.711 Facebook\nF1.21 Sofie 37 30 August 2021 141 7.052 Facebook\nF1.22 Nina 18 06 September 2021 120 5.864 Facebook\nF1.23 Linda 46 06 September 2021 140 4.724 Facebook\nTotal - - - - - 2.209 130.275 -\nAverage\n(SD)\n- - - - - 96\n(42)\n5.664\n(2.417)\n-\nPosts, round /two.tnumName Age Day Month Year Likes Reach Source\nF2.1 Ida 26 10 October 2021 40 2.418 Facebook\nF2.2 Anne 39 10 October 2021 42 2.630 Facebook\nF2.3 Sofie 20 17 October 2021 33 1.628 Facebook\nF2.4 Signe 44 17 October 2021 50 4.299 Facebook\nF2.5 Sofie 20 18 October 2021 17 1.216 Facebook\nF2.6 Signe 44 20 October 2021 24 1.400 Facebook\nF2.7 Hanne 39 24 October 2021 67 2.988 Facebook\nF2.8 Christina 46 24 October 2021 41 3.827 Facebook\nF2.9 Wicki 51 31 October 2021 26 1.460 Facebook\nF2.10 Maiken 46 31 October 2021 50 2.121 Facebook\nF2.11 Maria 46 07 November 2021 59 2.525 Facebook\nF2.12 Louise 38 07 November 2021 41 1.784 Facebook\nF2.13 Sara 37 14 November 2021 32 1.384 Facebook\nF2.14 Edith 41 14 November 2021 21 1.324 Facebook\nTotal - - - - - 543 31.004 -\nAverage\n(SD)\n- - - - - 39\n(14)\n2.215 (965) -\nFrontiers in Communication /one.tnum/two.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nTABLE /four.tnumMetrics of the #/one.tnumin/one.tnum/zero.tnum endometriosis social media posts on Instagram (in Danish).\nPosts,\nRound /one.tnum\nName Age Day Month Year Likes Impressions Source\nI1.1 Anne 39 21 June 2021 76 1.459 Instagram\nI1.2 Sofie 20 21 June 2021 68 1.305 Instagram\nI1.3 Signe 44 21 June 2021 83 1.647 Instagram\nI1.4 Hanne 39 28 June 2021 89 1.724 Instagram\nI1.5 Ann 46 28 June 2021 43 1.131 Instagram\nI1.6 Maiken 46 05 July 2021 59 1.142 Instagram\nI1.7 Louise 38 05 July 2021 71 1.091 Instagram\nI1.8 Sara 37 12 July 2021 64 1.465 Instagram\nI1.9 Christin 46 12 July 2021 45 1.142 Instagram\nI1.10 Sabina 35 19 July 2021 83 1.636 Instagram\nI1.11 Maria 46 19 July 2021 59 1.313 Instagram\nI1.12 Kirsten 48 26 July 2021 53 1.224 Instagram\nI1.13 Edith 41 26 July 2021 56 1.339 Instagram\nI1.14 Helle 38 02 August 2021 68 1.307 Instagram\nI1.15 Linda 44 02 August 2021 53 1.113 Instagram\nI1.16 Maria 32 09 August 2021 123 2.135 Instagram\nI1.17 Wicki 51 09 August 2021 93 1.974 Instagram\nI1.18 Jeanett 40 16 August 2021 62 1.451 Instagram\nI1.19 Heidi 44 16 August 2021 48 1.044 Instagram\nI1.20 Carina 32 23 August 2021 51 1.235 Instagram\nI1.21 Tine 37 23 August 2021 48 1.078 Instagram\nI1.22 Nina 18 06 September 2021 40 1.085 Instagram\nI1.23 Linda 46 06 September 2021 39 984 Instagram\nTotal - - - - - 1.521 31.024 -\nAverage (SD) - - - - - 64 (20) 1.349 (303) -\nPosts,\nround /two.tnum\nName Age Day Month Year Likes Impressions Source\nI2.1 Ida 26 10 October 2021 47 1.183 Instagram\nI2.2 Anne 39 10 October 2021 48 1.470 Instagram\nI2.3 Sofie 20 17 October 2021 42 1.413 Instagram\nI2.4 Signe 44 17 October 2021 42 1.259 Instagram\nI2.5 Hanne 39 24 October 2021 61 1.275 Instagram\nI2.6 Christin 46 24 October 2021 44 1.407 Instagram\nI2.7 Wicki 51 31 October 2021 36 964 Instagram\nI2.8 Maiken 46 31 October 2021 47 983 Instagram\nI2.9 Maria 46 07 November 2021 58 1.370 Instagram\nI2.10 Louise 38 07 November 2021 63 1.481 Instagram\nI2.11 Edith 41 14 November 2021 34 1.085 Instagram\nI2.12 Sara 37 14 November 2021 41 1.130 Instagram\nTotal - - - - - 516 15.020 -\nAverage\n(SD)\n- - - - - 47 (9) 1.252 (183) -\nFrontiers in Communication /one.tnum/three.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nTABLE /five.tnumMetrics of the #/one.tnumin/one.tnum/zero.tnum endometriosis social media posts by FEMaLeProject’s LinkedIn, Twitter, and Instagram (in English).\nPosts Day Month Year Engagements Discovery Source\nLinkedIn 1 11 March 2022 36 1.315 LinkedIn\nLinkedIn 2 17 March 2022 25 1.034 LinkedIn\nLinkedIn 3 25 March 2022 14 367 LinkedIn\nTotal - - - 77 2.716 -\nAverage (SD) - - - 25 (11) 905 (487) -\nPosts Name Age Day Month Year Engagements Impressions Source\nTwitter 1 Sabina 35 07 March 2022 204 2.143 Twitter\nTwitter 2 Sofie 20 08 March 2022 16 371 Twitter\nTwitter 3 Louise 38 09 March 2022 15 398 Twitter\nTwitter 4 Ida 26 10 March 2022 17 347 Twitter\nTwitter 5 Hanne 39 11 March 2022 26 389 Twitter\nTwitter 6 Nina 18 15 March 2022 47 1.526 Twitter\nTwitter 7 Anne 39 16 March 2022 18 268 Twitter\nTwitter 8 Maria 46 17 March 2022 4 238 Twitter\nTwitter 9 Heidi 44 18 March 2022 23 398 Twitter\nTwitter 10 Linda 46 21 March 2022 13 406 Twitter\nTwitter 11 Carina 32 22 March 2022 9 360 Twitter\nTwitter 12 Kirsten 48 23 March 2022 7 322 Twitter\nTwitter 13 Edith 41 24 March 2022 2 97 Twitter\nTwitter 14 Sofie 37 28 March 2022 3 125 Twitter\nTwitter 15 Maiken 46 30 March 2022 9 130 Twitter\nTotal - - - - - 413 7.518 -\nAverage (SD) - - - - - 28 (50) 501 (564) -\nPosts Name Age Day Month Year Likes Impressions Source\nInstagram 1 Sabina 35 07 March 2022 22 286 Instagram\nInstagram 2 Sofie 20 08 March 2022 20 205 Instagram\nInstagram 3 Louise 38 09 March 2022 22 231 Instagram\nInstagram 4 Ida 26 10 March 2022 23 257 Instagram\nInstagram 5 Edith 41 14 March 2022 14 250 Instagram\nInstagram 6 Nina 18 15 March 2022 15 231 Instagram\nInstagram 7 Anne 39 16 March 2022 16 201 Instagram\nInstagram 8 Maria 46 17 March 2022 19 219 Instagram\nInstagram 9 Heidi 44 18 March 2022 13 273 Instagram\nInstagram 10 Linda 46 21 March 2022 17 244 Instagram\nInstagram 11 Carina 32 22 March 2022 13 207 Instagram\nInstagram 12 Kirsten 48 23 March 2022 9 116 Instagram\nInstagram 13 Sofie 37 28 March 2022 18 277 Instagram\nInstagram 14 Maiken 46 30 March 2022 20 203 Instagram\nTotal - - - - - 241 3.200 -\nAverage (SD) - - - - - 17 (4) 229 (43) -\nFrontiers in Communication /one.tnum/four.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\n(N = 208, 51.5%), followed by FEMaLers (N = 96, 23.7%)\nand the general public (N = 94, 23.3%), and, to a modest\ndegree, policymakers (N = 6, 1.5%). Members of the community\nwere primarily engaging with Tweets and Instagram posts, while\nFEMaLers and the general public interacted with LinkedIn posts,\nwhereas policymakers engaged with LinkedIn posts and Tweets.\nSocial media metrics for the FEMaLe Project’s LinkedIn,\nTwitter, and Instagram accounts in 2022 are shown in\nTable 7.\nThe FEMaLe Project’s Twitter data show how the 15 campaign\nTweets, an integral part of the 35 total Tweets in March, contributed\nto leaving the second most impressions of all months in 2022.\nSimilarly, Instagram data reveals how the 14 campaign posts,\nthe majority of the 20 total posts in March, contributed to\nstimulating engagements from followers and leaving the second\nmost impressions of all months in 2022, only succeeded by\nNovember. The three #1in10 posts on LinkedIn in March did not\nperform differently compared to posts in the other months.\nDiscussion\nThe #1in10 campaign has created various kinds of impact on\nthree different levels: individual, communal, and societal.\nFor participating patients, the act of coming forward created\na space for more dialogue, which is otherwise challenged by\nthe taboos surrounding endometriosis. This validated their daily\nstruggles and gave them a sense of empowerment. The participating\npatients felt that they belonged to a community of people with\nendometriosis which fostered support that is vital for their ability\nto cope with their disease. Coming forward was a form of activism\non behalf of the community, which reinforced their sense of unity\nand solidarity with the community.\nThe #1in10 campaign reached many individuals, both within\nand outside the endometriosis community. Furthermore, the\nFEMaLe Project’s social media metrics revealed that the campaign\nmaterials had better engagement compared to other types of posts.\nAs such, the campaign has successfully reached and engaged society\noutside the endometriosis community.\nImpact for the participating patients\nStudies have highlighted the anonymous aspect of the internet\nas a factor of why different patient groups might benefit from\nsocial media use. It can work as a shield against stigma and\ndisapproval which creates the opportunity for patients more truly\nto express themselves (\nBargh et al., 2002 ; Naslund et al., 2016 ). On\nthe contrary, this study has demonstrated how the act of coming\nforward, with name, age and picture, can give a sense of individual\nempowerment and validation. People with endometriosis may\nbenefit from revealing their personal identity when participating\nin social media health campaigns, as it can be a tool to overcome\nnormalization, stigmatization, and taboo (\nBobel and Fahs, 2020 ;\nTomlinson, 2021).\nThe women in this study expressed how coming forward in the\ncampaign created an opportunity and an occasion to talk about\ntheir invisible disease and everyday struggles with people, who\nneither knew they had endometriosis nor how it really affected\nthem. Some women stated how the campaign made it possible\nfor them to answer questions and challenge misconceptions. Since\nthey gained recognition and acknowledgment from participating\nin the campaign, the women felt empowered. Furthermore, the\nwomen expressed how seeing the other women in the campaign\nhad an impact on their individual feeling of empowerment. It\ngenerated comfort to see the faces of other women in whom\nthey could recognize their own experiences. This has also been\nexamined in relation to other patient groups. In a study on\neating disorders amongst boys and men,\nBartel (2022) argued that\nseeing photographs of other boys and men with eating disorders\ncould reduce their sense of isolation through fostering feelings of\nsolidarity. Indeed, participants expressed that, because they found\na concrete person to whom they could relate, this helped them to\nfeel validated and break the taboo. Through these photographs,\nthe boys and men were able to challenge the perception of eating\ndisorders as only a “girl’s illness”(\nBartel, 2022). Similarly, the #1in10\ncampaign challenged the perception of endometriosis as “ just a\nbad period.”\nParticipating in the campaign gave the women a sense of\nagency. Using photo-elicitation, the women themselves decided\nhow they wanted to appear on their photograph and what message\nthey wanted to convey. As\nHolowka (2022) argued, it is important\nto raise awareness of lived experiences, as such insights can help\nreveal the gaps in endometriosis care. In line with [\nPaulovich’\n(2015) argument], the current study showed how social media\nhealth communication campaigns can give voice to patients\nwith endometriosis, thereby giving them feelings of control and\nownership. On their road to diagnosis, the participants in this study\nbegrudged the fact that they had been compelled to advocate for\nthemselves in situations that they believed should not demand such\nself-reliance (such as when trying to persuade doctors of their pain).\nHowever, as they willingly participated in the #1in10 campaign,\nthey framed their advocacy as a form of agency rather than\na burden. As they possessed crucial insights into living with\nendometriosis, the women were “experts by experience” (\nBartel,\n2022). Thanks to the campaign, they could use this position to\neducate and engender reflection both from people inside and\noutside health care settings (\nBartel, 2022). Furthermore, as Lorenz\n(2015) argued, seeing experience through the eyes of those who\nsuffer can be a way to generate empathy and understanding.\nThe agency enabled the individual woman to “ stand taller” (Ida).\nSome women, who had not previously publicly discussed their\nexperiences of endometriosis, said that they would like to continue\nto contribute to the subject in this manner.\nImpact for the community\nIn a variety of ways, the participating women highlighted the\nsignificance of connecting with other people with endometriosis\nwith whom they could identify, exchange experiences, and share\ninformation. This was especially important considering the lack\nof understanding or outright dismissal the participating patients\nregularly faced from others who did not have endometriosis, and\ntherefore did not understand the severity of the condition. Since\nthey had previously felt that they were alone in their in-depth\nFrontiers in Communication /one.tnum/five.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nTABLE /six.tnumFEMaLe Project’s social media campaign engagements.\nSocial Media Total posts Audience engagements: number of likes\nCommunity\nmember\nFEMaLer, incl.\nadvisers\nGeneral\npublic\nPolicymaker Total\nLinkedIn 3 15 (21.4%) 29 (41.4%) 23 (32.9%) 3 (4.3%) 70 (17.3%)\nTwitter 15 57 (61.3%) 20 (21.5%) 13 (13.9%) 3 (3.2%) 93 (23%)\nInstagram 14 136 (56.4%) 47 (19.5%) 58 (24%) - 241 (59.7%)\nTotal 32 208 (51.5%) 96 (23.7%) 94 (23.3%) 6 (1.5%) 404 (100%)\nunderstanding of what it means to live with debilitating pain\nor fatigue, several of the participants felt relief when they first\nconnected with other people with endometriosis. This feeling of\nunity, which is based on shared bodily knowledge, denotes an\ninherent sense of community.\nThis “community” of people, who share the unique experience\nof living with endometriosis, is what\nWhelan (2007) calls an\n“epistemological community”: “ a group which shares a body of\nknowledge and a set of standards and practices for developing\nand evaluating knowledge ” (\nWhelan, 2007 ) She found that such a\ncommunity generates reciprocal validation and social support for\ncommunity members (\nWhelan, 2007 ). Studies have long shown\nthat perceived social support has a positive effect on mental\nand physical wellbeing and is integral to people’s ability to cope\nwith disease (\nJacobson, 1987 ; Uchino et al., 1996 ; Ribera and\nHausmann-Muela, 2011 ). This echoes the relief that the women\nin the #1in10 campaign experienced when connecting with their\nepistemological community.\nMany of the participating women felt immense gratitude\ntoward those from the community who had previously come\nforward to talk openly about endometriosis and this encouraged\nthem to want to come forward themselves. Many expressed a\nkeen wish to promote awareness, knowledge, and support for the\nsake of the people who will be diagnosed with endometriosis in\nthe future. This was their primary motivation for participating\nin the #1in10 campaign. Their hope was that future people with\nsymptoms of endometriosis might be better equipped to recognize\nthe symptoms and feel more able to advocate for themselves when\nneeded and, as such, receive a diagnosis sooner. By participating in\nthe #1in10 campaign, the women were thus engaging in activism\non behalf of their epistemological community. This indicated\nthat they felt a strong sense of belonging to the community,\nwhich fostered solidarity and reciprocal responsibility. Indeed,\nas a sense of solidarity with others has been shown to reduce\nmenstrual stigma, activists in the wider menstrual health movement\nhave underlined the importance of fostering solidarity among\nwomen and other people who menstruate (\nFahs, 2016; Tomlinson,\n2021).\nThe epistemological community can also be observed online,\nwhere community members form connections and gather into\ngroups via social media. Several previous studies have shown\nhow people with endometriosis frequently use social media for\nhealth purposes. On social media, people with endometriosis can\nfind support and understanding as well as obtain new knowledge\n(\nHolowka, 2022; Metzler et al., 2022 ; Missmer et al., 2022 ; van den\nHaspel et al., 2022 ). Likewise, the patient participants of this study\nall used, or had used, social media to connect with other people with\nendometriosis as well as to share, or to find, more information.\nThe #1in10 campaign was yet another opportunity for the\nparticipants to share their personal experiences of endometriosis\nwith other members of the community. In fact, more than half\nof the engagements with the #1in10 campaign ( N = 208, 51.5%)\ncame from people with endometriosis. Additionally, it allowed\nthem to inform the general public of the often-debilitating nature of\nendometriosis. The fact that the #1in10 campaign was co-produced\nwith identifiable members of the endometriosis community, and\ntheir accounts were legitimized by DEPA and the FEMaLe Project,\nhelped to validate the shared information in the eyes of the\ngeneral public.\nImpact for society\nSocial media metrics showed how March 2022 in general, and\nthe #1in10 campaign in particular, performed better in terms of\nachieving engagements than other 2022 posts made by the FEMaLe\nProject. This speaks to the overall success of the campaign in\nreaching an audience. The quantitative data showed that 48.5%\n(N = 196) of the engagements with the social media campaign\nwere from people outside the epistemological community. Almost\nhalf of these ( N = 96, 23.7%)were from FEMaLe Project staff\nand advisers; people already engaged with endometriosis in some\nway. However, the remaining half ( N = 94, 23.3%) covered\nthe general public and therefore this group was comprised of\npeople who did not necessarily work with, or have any knowledge\nabout, endometriosis.\nThe #1in10 campaign performed comparatively well on all\nsocial media platforms, as evident by the fact that it contributed\nto leaving the second most impressions on both the FEMaLe\nProject’s Twitter and Instagram accounts in 2022. On Twitter, it\nwas only exceeded by January in all probability because of the\nnewsworthiness of the launch of the French national strategy to\ncombat endometriosis. On Instagram it was only succeeded by\nNovember, because of a joint event with the Endometriosis UK\ncharity (51.300 followers).\nThis campaign has caught particular attention and engagement.\nPrevious studies of similar health campaigns have argued that\nco-creation and visual tools are essential in creating this\nattention and engagement. Co-creation ensures that the message\nis aligned with the interest of the patient group and that\nvisual representations command attention and foster empathy\n(\nLefebvre et al., 2020 ; Cluley et al., 2021 ; Jarreau et al.,\nFrontiers in Communication /one.tnum/six.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nTABLE /seven.tnumFEMaLe Project’s social media metrics for /two.tnum/zero.tnum/two.tnum/two.tnum.\nMonths Social media Posts Engagements, incl. likes Impressions, incl. discovery\nLinkedIn 22 318 14.033\nJanuary Twitter 29 2.284 62.252\nInstagram 12 184 2.640\nLinkedIn 13 231 10.653\nFebruary Twitter 17 732 12.978\nInstagram 5 72 1.196\nLinkedIn 13 424 21.990\nMarch Twitter 35 1.583 35.054\nInstagram 20 368 4.706\nLinkedIn 10 262 13.960\nApril Twitter 14 589 10.456\nInstagram 6 73 1.346\nLinkedIn 16 443 21.270\nMay Twitter 16 841 18.102\nInstagram 11 138 1.991\nLinkedIn 14 532 23.967\nJune Twitter 15 541 10.781\nInstagram 8 111 1.833\nLinkedIn 6 240 11.351\nJuly Twitter 10 779 13.732\nInstagram 4 47 683\nLinkedIn 9 573 30.552\nAugust Twitter 19 793 17.005\nInstagram 5 72 1.289\nLinkedIn 9 231 14.085\nSeptember Twitter 13 563 9.079\nInstagram 6 72 1.383\nLinkedIn 13 536 31.573\nOctober Twitter 20 796 11.851\nInstagram 11 166 2.707\nLinkedIn 13 337 19.536\nNovember Twitter 13 495 10.813\nInstagram 12 272 7.434\nLinkedIn 16 678 34.159\nDecember Twitter 15 616 14.795\nInstagram 14 168 3.705\nLinkedIn 154 4.805 247.129\nAll months in total Twitter 212 10.612 226.898\nInstagram 114 1.743 30.913\nTotal - 480 17.160 504.940\n2021; Ali and Rogers, 2022 ; Bartel, 2022 ). It can therefore be\nassumed that co-creation and the visual representations had a\nsignificant impact on the level of engagement achieved by the\n#1in10 campaign.\nFrontiers in Communication /one.tnum/seven.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nStrengths and limitations\nIt appears that no long tradition for studying the impact of\nsocial media health campaigns exists and no strong precedence for a\nspecific methodological approach is available. One of the strengths\nof this study is the mixed methods approach where (1) the use of\nqualitative methods allows for an examination of the participating\nwomen’s subjective experiences of co-creating the #1in10 campaign\nand belonging to the epistemological community of people with\nendometriosis, and (2) the use of quantitative methods allows for\nan overview of the reach of the #1in10 campaign and how the\ncommunity and the general public engaged with it. The use of a\nmixed methods approach is therefore crucial to examine the impact\nof the #1in10 campaign. Yet, each method also has strengths and\nlimitations on its own.\nQualitative method\nThe seven participants of this study constitute a\ndemographically diverse group (\nTable 1), and their experiences\nof living with endometriosis are rather different. However, the\nparticipants are not representative of all people with endometriosis,\nas the study is affected by considerable sampling bias. Studies have\nshown that people who actively engage with patient communities\non social media are those who are most affected by their disease\n(\nJosefsson, 2005; van den Haspel et al., 2022). As participants of this\nstudy are recruited through DEPA, it can be assumed that they are\namong the patients most affected by endometriosis. Additionally,\n15 women initially expressed an interest in participating in the\ncurrent study, but eight failed to return a signed consent form\nand were thus not interviewed. It is possible, albeit improbable,\nthat they chose to withdraw from the interview, because they had\na negative experience participating in the campaign. If this is the\ncase, this is a perspective that is entirely overlooked in the analysis.\nThat being said, it might also be that the potential interviewees\nforgot to return the consent form, did not have time to do the\ninterview, or had a flare up of their symptoms, so they did not\nfeel well enough to participate after all. Despite both known and\npotential sampling biases, the aim of the qualitative part of the\nstudy remains the same; to study a few particular women and\ntheir situated experiences. It has never been the goal to conclude\nanything general or universal about people with endometriosis.\nQuantitative method\nTraditionally within research, social media metrics have been\nconsidered as mere indicators of use and visibility. More recently,\nthey have been used to measure interaction and circulation across\ndifferent online communities (\nDíaz-Faes et al., 2019 ), which is the\ncase for the present study. Young et al. (2020) found that social\nmedia metrics summarizing aggregate activity allow for insights\ninto the extent of engagement with campaign content that leave less\nroom for human error than traditional ways of manually tallying\nmetrics. Thus, the use of social media metrics can help researchers\nunderstand the degree to which a campaign is eliciting appropriate\nlevels of participation. In this study the use of social media metrics\nadds to the traditional data collection and analysis, e.g., social media\nmetrics enable the identification of the specific people, who engage\nwith the #1in10 campaign content.\nThe social media metrics collected in this study are dependent\non the networks already established and surrounding both DEPA ’s\nand the FEMaLE Project’s social media accounts. This creates a\nsampling bias, as the existing followers of these accounts become\nthe primary audience of the campaign, and their willingness to\nengage is vital for the dissemination. Neither DEPA nor the\nFEMaLe Project have paid for promotion of content.\nAs it takes limited effort to engage with a campaign on social\nmedia, online engagement is not tantamount to offline action. This\nstudy is therefore not able to suggest actual behavior or attitude\nchanges based on social media metrics. Further studies on this\ntopic might ideally include qualitative perspectives and experiences\nfrom the audience of the #1in10 campaign, such as members of\nthe epistemological community as well as the general public, as\nthey can provide a broader insight into how the campaign is\nreceived and acted upon. This could provide more knowledge\nabout why people engage with the campaign, and whether the\n#1in10 campaign fulfills the participants’ hopes for the campaign:\nto put endometriosis on the societal and political agenda and\nthereby increase awareness, attract more funding for research and\ninnovations as well as establish better treatment options for all.\nConclusion\nCombining qualitative and quantitative methods, this study has\ndemonstrated that the #1in10 campaign had an impact on three\ndifferent levels: individual, communal, and societal.\nOn an individual level the campaign fostered empowerment\nfor the participating women, because they felt that their\nparticipation contributed to making their struggles visible, known,\nand acknowledged.\nThe participants took part in the campaign on behalf of their\ncommunity of people with endometriosis, in the hopes that their\nacts of activism would benefit future members of the community.\nAs 51.5% ( N = 208) of the engagements with the campaign were\nmade by members of the community, it is evident that the campaign\nresonated with the community. As such, the community was vital\nfor both the creation and the dissemination of the campaign.\nThe #1in10 campaign performed comparatively well with\nregards to creating engagements on social media—not just within\nthe community but also in the wider society. While this does not\nnecessarily entail a change in attitude or behavior, it suggests that\nthe co-created and visual nature of the campaign had an impact on\nthe audience.\nData availability statement\nThe raw data supporting the conclusions of this article will be\nmade available by the authors, without undue reservation.\nEthics statement\nWritten informed consent was obtained from the individual(s)\nfor the publication of any potentially identifiable images or data\nincluded in this article.\nFrontiers in Communication /one.tnum/eight.tnum frontiersin.org\n\nStanek et al. /one.tnum/zero.tnum./three.tnum/three.tnum/eight.tnum/nine.tnum/fcomm./two.tnum/zero.tnum/two.tnum/three.tnum./one.tnum/one.tnum/five.tnum/four.tnum/two.tnum/nine.tnum/seven.tnum\nAuthor contributions\nDS, IH, KH, and UK coordinated the project, conceived and\ndesigned the study, and drafted the manuscript. DS, IH, and UK\nexecuted the study and obtained the data. All authors analyzed\nand interpreted the data, critically revised the manuscript, read and\napproved the final manuscript, and agree to be accountable for all\naspects of the work.\nFunding\nThis article is part of the project Finding Endometriosis using\nMachine Learning (FEMaLe), which has received funding from\nthe European Union’s Horizon 2020 research and innovation\nprogramme (Grant no. 101017562). This work was also supported\nby the Leverhulme Trust under Grant ECF-2019-232.\nAcknowledgments\nThank you to DEPA for helping with recruiting participants.\nThank you to all the participants for making the time for\nan interview. This would not have been possible without\nyour contribution.\nConflict of interest\nThe authors declare that the research was conducted\nin the absence of any commercial or financial relationships\nthat could be construed as a potential conflict\nof interest.\nPublisher’s note\nAll claims expressed in this article are solely those\nof the authors and do not necessarily represent those of\ntheir affiliated organizations, or those of the publisher,\nthe editors and the reviewers. Any product that may be\nevaluated in this article, or claim that may be made by\nits manufacturer, is not guaranteed or endorsed by the\npublisher.\nSupplementary material\nThe Supplementary Material for this article can be found\nonline at: https://www.frontiersin.org/articles/10.3389/fcomm.\n2023.1154297/full#supplementary-material\nReferences\nAli, P., and Rogers, M. 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Med. 382, 13. doi: 10.1056/NEJMra1810764\nFrontiers in Communication /two.tnum/zero.tnum frontiersin.org","source_license":"CC0","license_restricted":false}