{"paper_id":"c51ee208-30f6-4bf8-8b0f-8f92d32062e3","body_text":"Infertility affects 1 in 6 adults globally, according to a document released by the\nWorld Health Organization (WHO) ( WHO, 2023 ).\nNumbers are higher in the Americas (20%) and the Western Pacific (23.2%). The\nAmerican Society for Reproductive Medicine (ASRM) has updated the definition of\ninfertility to be more inclusive and embrace the diverse population that may need\nmedically assisted reproduction ( Practice Committee\nof the ASRM, 2023 ). Unfortunately, access to diagnosis and treatment is a\nsignificant issue worldwide, especially in lowand middle-income countries ( Njagi  et al ., 2023 ). Many\npeople turn to online resources to obtain information. It is no secret that the use\nof social media as a source of health-related information has escalated in recent\nyears. Reasons people search social media for information on healthcare topics may\nvary but include finding out about a specific disease or a medical doctor/hospital,\nobtaining guidance or a second opinion, and connecting with others facing the same\nissue ( Farsi  et al .,\n2022 ).\nThe way people face their infertility journey varies, as the road to conception and\nfamily building can be challenging. Nearly 50% of infertile couples never consider\ntreatment, and almost 25% are unable to carry on due to the emotional distress\ninvolved ( Domar  et al .,\n2021 ). Moreover, little financial and emotional support is available to\ninfertile couples. In this hostile setting, social media platforms surface as a\nsource of information and emotional support ( Sormunen  et al ., 2020 ;  Farsi  et al ., 2022 ). Social media may be the only\nsource of information for many people as answers and specific diagnoses are readily\navailable. However, prompt access to unverified information may pose relevant issues\nand lead to misconceptions. Anyone can post about almost anything on social media,\nand studies have indicated that caution is warranted given the proliferation of\nmisinformation in posts on relevant public health topics such as smoking, drugs, and\nvaccines ( Suarez-Lledo & Alvarez-Galvez,\n2021 ).\nOncofertility is a new interdisciplinary area in fertility care that addresses the\nissue of gonadotoxicity associated with cancer treatments and aims at preserving\nreproductive potential ( Sehring  et\nal ., 2021 ). Although known for years, cancer\ntreatment-related fertility issues remain overlooked and, at times, inadequately\naddressed. According to the REDLARA 2019 report, only 5.7% of the 7,990 fertility\npreservation cycles initiated in 2019 were due to cancer-related factors ( Zegers-Hochschild  et al .,\n2022 ). Reasons for such low usage of oncological fertility preservation may\ninclude a lack of awareness at all levels of care (professionals and organizations),\npatients focusing on overcoming and surviving cancer, and the costs involved ( van den Berg  et al ., 2019 ). As\ncancer cases and survivorship increase and women postpone maternity, the need for\neducation on cancer prevention and oncological fertility preservation becomes\nevident ( Sehring  et al .,\n2021 ).\nInstagram is a free online social media platform with about 122,9 million users in\nBrazil (42.39% males and 57.61% females) ( Bianchi,\n2024 ). Brazil is the fifth-largest social media market in the world and\nthe number two in the American continent ( CR Team,\n2023 ). Despite the large audience and the educational potential Instagram\npresents, the use of Instagram in fertility/infertility care needs to be\ninvestigated appropriately. Studies in the United States reveal most posts are\nauthored by patients who want to share their infertility journey. Physicians and\nmedical societies have had little participation ( Blakemore  et al ., 2020 ;  Peyser  et al ., 2021 ). We found that no studies have\nbeen published on the use of Instagram in fertility care in Brazil. As millions of\nBrazilians use Instagram as a significant source of information, we aimed to\ndetermine the prevalence, authorship, and types of fertility-related information,\nincluding oncofertility, shared on Instagram in Brazil using hashtag and content\nanalysis. Secondary endpoints included the analysis of post content according to\nauthor type (healthcare professional versus lay people) and the identification of\ntopics in these interactions.\n\nEleven hashtags consisting of fertility terms commonly used on Instagram were chosen\nbased on a list suggested by  https://www.tagsfinder.com/ \n(accessed on February 15, 2021). The list included #infertility, #ivf,\n#endometriosis, #tryingtoconceive, #maternity, #humanreproduction, #pregnancy,\n#invitrofertilization, #assistedreproduction, #pregnant, and\n#difficulttogetpregnant. The corresponding hashtags in Brazilian Portuguese were:\n#infertilidade, #fiv #endometriose, #tentante, #maternidade, #reproducaohumana,\n#gravidez #fertilizacaonvitro, #reproducaoassistida #grávida,\n#dificuldadeparaengravidar.\nFor oncofertility, the following hashtags were chosen: #cancerandpregnancy\n(#canceregravidez), #oocytecryopreservation (#congelamentodeovulos), #oncofertility\n(#oncofertilidade) and #fertilitypreservation (#preservacaodefertilidade).\nThese hashtags were chosen for their potential use by individuals seeking fertility\ninformation. Our Instagram hashtag search and analysis methods were based on\nprevious studies that considered the most common hashtags posted by fertility social\nmedia influencers ( Blakemore  et al .,\n2020 ;  Peyser  et al .,\n2021 ).\nA new Instagram account  (@resmedgob ) was created to avoid potential\nplatform algorithm biases and evaluate the hashtags of interest. Three study\ninvestigators (CK, MCM, and PF) performed content analyses, which were\ndouble-checked by a fourth (MMC).\nIn March 2021, the most recent 20 posts containing the abovementioned hashtags were\nanalyzed. Posts that received over 20 comments were analyzed to determine the topics\nthat prevailed in those interactions.\nWe adopted Peyser’s authorship categories and a combination of Peyser’s and Perone’s\ncategories for content analysis ( Perone  et\nal ., 2020 ;  Peyser  et\nal ., 2021 ). We excluded the advertisement and research\ncategories since we did not include commercial posts. We also excluded the personal\ncategory and added Perone’s categories of emotion, social support, and coping\nmechanisms, which are more specific and might help understand the spectrum of\nemotions affecting patients dealing with infertility. Posts not written in Brazilian\nPortuguese, video posts, reposts of other accounts, and posts selling products and\nservices were also excluded. The following categories were used in content analysis:\neducational, patient experience, outreach, emotion, social support, and coping.\nThree authors analyzed posts falling into these categories, and a fourth\ndouble-checked them (Marcia M Carneiro), as described above. Categorization doubts\nwere sorted out among authors.\nThe definitions of each category were based on  Peyser\n et al . (2021) . Educational posts included those\naimed at providing education or information on fertility themes such as infertility\ndiagnosis or workup. Outreach posts included those aimed at engaging users by\nencouraging comments or asking questions such as “Leave a comment if you have had a\nlow response to medication.” Patient experience included accounts of an individual’s\njourney during treatment, and social support revolved around interactions with\nindividuals in IVF journeys. The coping category discussed strategies to deal with\ntreatment stress and difficulties, while emotion referred to posts in which the\nemotional aspects of fertility were addressed.\nAuthorship was divided into healthcare professionals (HCP) and lay people (LP). In\nthe HCP category, we included physicians, other healthcare workers (e.g., nurses,\npsychologists, and pharmacists), and professional societies (Brazilian Society of\nAssisted Reproduction, for example).\nText, hashtags, and relevant comments were extracted from each post. Relevant post\nscreenshots were taken, and the links to all posts were individually transcribed\nonto our database. The frequencies of occurrence of each topic and authorship were\ncalculated. Statistical analyses were restricted to descriptive of the frequency of\neach outcome. Three authors categorized the posts. In cases of disagreement, a\nfourth author was involved in defining the category to which the post belonged.\nNo ethical approval was required as we used only publicly available information, and\nour evaluation did not disclose information that might allow the identification of\nthe posts’ authors ( Brazil, Ministério da\nSaúde. Conselho Nacional de Saúde, 2016 ).\n\nOur search yielded 220 posts. Healthcare professionals were responsible for most\nposts ( Table 1 ) but were closely followed by\nlaypeople.\nAuthorship:#infertility HCP (healthcare professional) LP (laypeople).\nMost HCPs posting infertility-related hashtags were medical doctors (n=78; 68.4%) and\nfertility clinics (n=27; 23.6%). When analyzed for authorship, #maternity was 100%\nused by LP, while #pregnant, #pregnancy, and #trying to conceive were primarily used\nby HCP. Interestingly, the majority of posts on technical topics such as\ninfertility, IVF, human reproduction, and assisted reproduction were authored by\nlaypeople.\nA total of 98 posts on #oncofertility were retrieved for analysis. Most (77.5%; n=62)\nwere written by HCPs, the majority of whom were medical doctors (n=52; 65.0%),\nfollowed by fertility clinics (n=7; 8.75%), psychologists (n=2; 2.5%), and one\nbiomedical scientist (1.25%).\nTechnical terms such as oncofertility, fertility preservation, and oocyte freezing\nwere almost exclusively used by HCPs ( Table\n2 ). Fertility-related hashtags were placed in the following categories: 39%\nin educational, 19% in emotional, 16% in social support, 13% in patient experience,\n9% in coping, and 4% in outreach ( Table 3 ).\nOncofertility-related posts were categorized as follows: 55% in educational, 15% in\npatient experience, 12.5% in emotional, 11.2% in patient support, and 3.2% in\ncoping. Content analysis ( Table 3 ) reveals\nmost posts were in the educational (39%) category, followed by emotional and social\nsupport.\nHashtag subject analysis according to authorship: HCP (healthcare\nprofessional) LP (laypeople).\n#infertility post content analysis.\nAuthors agreed on the categorization of most posts (58%). As coping strategies may be\nused in response to mixed emotions throughout the infertility journey and entail\nsocial support, in some instances, it was challenging to decide on the main subject\nof the post to categorize it properly. In such cases, doubts were sorted out among\nthe authors, considering the definitions set out by Peyser’s and Perone’s categories\nfor content analysis ( Perone  et\nal ., 2020 ;  Peyser  et\nal ., 2021 ).\n\nOur results revealed that infertility is a topic that attracts attention on Instagram\nin Brazil. Both healthcare professionals and laypeople have written posts on the\nsubject. Medical doctors and fertility clinics appear to dominate the Brazilian\nsocial media landscape as far as hashtags involving infertility and oncofertility\nare concerned. Educational posts are the most common, but emotional and social\nsupport are also relevant categories. It is also interesting to see that lay people\nproduce the majority of posts using technical terms such as IVF, human reproduction,\nand assisted reproduction. In oncofertility, the participation of laypeople is\ndramatically reduced, and healthcare professionals write most posts on the\nsubject.\nBrazil is a critical player in the social media scene. Brazilian IVF clinics are\nmindful of the relevance of social media, and most are present on Facebook (79.5%)\nand Instagram (75.8%) ( Carneiro  et\nal ., 2023 ). This is the first study to look at the use of\nsocial media in infertility/oncofertility in Brazil. Infertility affects 1 in 6\npeople globally. Many with the condition seek information and knowledge on social\nmedia platforms such as Instagram, where post content and authorship are highly\nrelevant. In Brazil and Latin America, access to proper fertility/oncofertility care\nsadly remains the privilege of a few due to the high costs involved, the lack of\nhealth insurance coverage, and the scarcity of publicly funded fertility clinics\n( Machin  et al ., 2020 ;\n Zegers-Hochschild  et al .,\n2022 ). Healthcare professionals must be made aware of the need to improve\npatient education ( Zegers-Hochschild  et\nal ., 2022 ).\nA few papers have been published on the role of social media in the fertility\njourney, but they are restricted to authorship evaluation. Content quality needs to\nbe thoroughly analyzed and is a matter of concern. Our results on authorship show\nthat laypeople account for 48% of the posts on infertility. Laypeople had\npublications on every topic of interest, except for #pregnancy, #pregnant, and\n#tryingtoconceive. The majority of posts on technical terms such as infertility,\nIVF, assisted reproduction, and human reproduction were authored by laypeople. It is\npossible that healthcare professionals chose non-technical and non-scientific terms\nto facilitate comprehension. This means people are reading information on in vitro\nfertilization, endometriosis, and assisted reproduction from sources that may not be\nevidence-based or have the knowledge to explain complex treatments adequately.\nPeople looking for information on conception are more likely to seek help online\nbefore talking to a medical doctor, which means they might have access to\npoor-quality information first.  Blakemore  et\nal . (2020)  found the most frequent fertility content on\nInstagram was personal stories (31.7%) and inspiration or support (23.7%), while\neducation was a significant topic in our study. The authors found that most accounts\nin the fertility-related social media landscape belonged to patients, inspirational\naccounts, and support groups, all of which were more influential than physicians,\nmedical societies, or fertility clinics with social media accounts. In Brazil,\nhealthcare professionals and laypeople share almost evenly the authorship of posts\non Instagram. Therefore, Brazilian fertility specialists and medical societies\nshould attempt to increase their involvement in social media to educate, provide\nsupport, and increase awareness of patients.\nThe dissemination of misinformation on social media platforms is a primary concern in\nseveral areas of healthcare. Despite the widespread availability of information\nonline and on social media, knowledge gaps remain related to relevant aspects of\nhuman reproduction, including the correct “fertile window” ( Hammarberg  et al ., 2017 ). There is an urgent\nneed to grasp the dynamics of social media and develop ways to counteract\nmisinformation on healthcare. Misinformation may be particularly hazardous in\nfertility care when the web and social media are the only sources of information\navailable to potential patients for whom access to sophisticated procedures relies\non their ability to afford treatment ( Machin\n et al ., 2020 ). The Brazilian Instagram scene in\nhealthcare needs to be better understood, and contents more closely probed for\nquality. Unfortunately, it is not difficult to find accounts selling miracle\ntreatments and pills that supposedly improve pregnancy rates in substitution for\nIVF, which may create false hopes and add to the burden these patients face on their\nroad to fertility.\nOncofertility is not a popular theme on Brazilian Instagram, which perhaps reflects\nthe low use of fertility preservation in individuals with cancer in Latin America,\nas indicated by the 2019 REDLARA report ( Zegers-Hochschild  et al ., 2022 ). Only 98 posts were\nretrieved. Most were authored by HCPs who used technical terms such as\noncofertility, fertility preservation, and oocyte freezing almost exclusively.\nTechnical terms may further impair patient comprehension of the subject, poorly\nexplained on American fertility clinics’ websites ( Mujumdar  et al ., 2022 ). We tried but failed to find\nother published studies to compare our results. As cancer rates are expected to\nincrease in the coming years and women keep postponing pregnancy, the need for\noncological fertility preservation should increase ( Sehring  et al ., 2021 ).\nThe availability of clearly written, evidence-based information on social media will\nbe crucial for individuals undergoing cancer treatment and their families. Social\nmedia platforms such as Instagram are an important means of spreading evidence-based\ninformation on oncofertility and fertility preservation and increasing awareness\namong laypeople and healthcare professionals.\nThis study included only Brazilian Portuguese Instagram accounts and excluded\ncommercial posts and videos. Our analysis covered Brazil and followed the framework\ndefined in previous studies ( Perone  et\nal ., 2020 ;  Peyser  et\nal ., 2021 ), with the primary aim of mapping the Brazilian\nInstagram fertility landscape. Although not discussed in this study, content quality\nanalysis is a significant problem that cannot be overlooked in future studies to\nstrengthen the dissemination of accurate information to patients. Many people follow\nthe advice of “digital influencers.” Reproductive medicine specialists should ensure\na solid online presence to counteract misinformation and obtain information about\nideas and beliefs shared online that might affect optimal patient care and education\n( Blakemore  et al ., 2020 ;\n Metzler  et al ., 2022 ).\nTools to make such evaluations must be developed to allow the proper analysis of\nthis issue in the future.\nIn conclusion, our study shows that both healthcare professionals and laypeople share\nfertility-related posts on fertility on Instagram using various hashtags.\nEducational posts are the majority, followed by emotional and social support.\nHealthcare professionals concentrate on education and use more technical hashtags,\nwhereas laypeople focus on emotional aspects. Instagram may play an essential role\nin educating and providing emotional support to people facing fertility issues. As\nBrazilians increasingly resort to Instagram to learn about various health topics,\nunderstanding who is behind the fertility-related posts may help reshape this\nlandscape and disseminate good quality information. This is vital as access to\nproper medical evaluation and treatments is a problem in Brazil, and social media\nmay be the sole source available to many. Further studies should concentrate on the\nquality of information provided by laypeople and healthcare professionals.","source_license":"public-domain-us","license_restricted":false}