The virtual infertility community: a qualitative analysis of patient experiences shared on Instagram

Purpose To characterize the experiences of patients undergoing in vitro fertilization (IVF) through a qualitative analysis of content shared on Instagram.

We analyzed Instagram posts from five randomly selected days in February 2020. The hashtag, #ivfcommunity, was selected to identify public posts authored by Instagram’s IVF community members from multiple treatment centers. Text, photos, hashtags, and emojis were collected from 452 included posts and entered into a study-specific database. Using thematic coding, a four-member team initially coded the first day in February. Common themes were agreed upon by all team members, and a preliminary codebook was created for further analysis. The remaining posts were coded by two-member teams who reached a consensus on the multiple themes assigned to each individual post.

Analysis of posts led to the identification of five major themes: documentation of the medical and physical experience of IVF (76.1%), the emotional spectrum (43.1%), social support (49.2%), coping mechanisms (29.9%), and education (receipt, provision) (11.1%).

Our findings suggest that women undergoing IVF often utilize social media to document daily experiences, offer and recognize sources of community support, and provide and receive education regarding their treatments. Given the increased prevalence of mental health conditions, medical providers should explore challenges discussed on online platforms and consider harnessing the supportive nature of online communities to supplement care for IVF patients.

In vitro fertilization, patient experiences, social media, Instagram, qualitative analysis

Infertility is a seemingly silent epidemic that impacts couples throughout the world with roughly seven million American couples seeking care for infertility annually [1]. The majority of individuals who opt for assisted reproductive technologies are recommended to undergo in vitro fertilization (IVF) [2]. While IVF treatments may bring new hope to individuals, couples face unique burdens in part due to the relatively low success rate per frozen embryo transfer [2]. Each cycle brings challenges of cost and time as couples complete an average of 2.7 cycles and spend US$61,377 for a successful live birth [3, 4]. Additional challenges include physical side effects of care including multiple procedures and medications associated with risks [3, 5, 6]. Consequently, the amount of time spent on fertility treatment positively correlates with fertility-related stress and ultimately mental health conditions [7, 8]. To combat this stress, ample social support is needed [8, 9]. Wilkes et al. reported that despite describing adequate social support, IVF patients were less likely to discuss their fertility difficulties with their peers as compared with those conceiving naturally [10]. Reasons cited were that IVF patients did not want their friends to feel guilty about having a child or diminish the joy of discussing their naturally conceived child’s accomplishments [10]. This hesitancy to share with others may perpetuate internal feelings of shame related to infertility and lead to negative coping strategies such as isolation and repression of emotions in IVF patients [11]. To combat the gap in social support, studies in other medical fields have shown that patients often turn to the internet to build a sense of community and connect with individuals who are going through similar experiences [8, 12–15]. A past survey involving infertility patients found that 79.9% of respondents felt that social media positively impacted their patient experience [14]. In addition to garnering increased support, studies have suggested that women use social media to supplement information from healthcare providers about chronic conditions, including infertility [14, 16]. One study of reproductive-aged individuals indicated a low to average self-rated level of fertility knowledge and described the internet as a common source of fertility-related information [17]. Social media in particular is attractive for patients due to the ability to quickly learn and receive answers regarding a particular diagnosis [18, 19]. A critical exploration of social media may help infertility providers gain insight into patient experiences. To date, there are no current studies qualitatively describing what information IVF patients share, seek, or receive on social media. Given that a high percentage of reproductive-age females use social media, the authors hypothesized that exploration of public content may provide a deeper understanding of the experiences shared among women and current gaps in medical care as perceived by the population [20, 21]. The aim of this study was to perform qualitative analysis of Instagram posts to understand the experiences of patients undergoing, or who have previously undergone, IVF treatment.

Design This study involved the review of publicly available posts pertaining to IVF treatment on Instagram. Instagram was selected based on the availability of public posts and the frequency of reproductive-aged females using the platform compared with other platforms such as Facebook, Twitter, and Reddit [20, 22, 23]. A new Instagram account, ivf335, was created solely for purposes of the study to avoid potential filtering of posts by the platform’s algorithm. This public account was not affiliated with the authors’ respective universities and was not used to interact with the users associated with the posts included in this study. Posts were identified for inclusion using the hashtag #ivfcommunity. Other hashtags were considered including #ivf, #ivfjourney, #ttccommunity, and #infertility; however, preliminary assessment revealed that #ivfcommunity had over 200,000 posts and yielded more posts from patients compared with providers. Of note, many included posts contained multiple hashtags which suggested that posts containing other considered hashtags may be identified through the use of #ivfcommunity alone. To create the database, dates from February 2020 were randomized, and the first five dates were selected [1, 3, 7, 20, 24]. This month was selected as it did not include widely recognized holidays or infertility holidays such as April’s Infertility Awareness Week and October’s National Pregnancy and Infant Loss Awareness Month. The self-certification tools from the authors’ respective institutional review boards (IRBs) were used to determine that the study did not qualify as human subject research; thus, IRB approval was not required. Subjects After completing preliminary studies, it was noted that around 200 posts utilized the hashtag, #ivfcommunity, daily. In order to maintain an even representation of the randomized days, up to 200 posts from each date were collected in chronological order. Exclusion criteria included posts that were not in English, were unrelated to a patient’s IVF experience, reposted from another user; shared by a doctor, clinic, or company; or were advertisements (Fig. 1). Posts were also excluded if they contained a video as content analysis was not deemed comparable with text and photos alone. Exclusion criteria were critical for the identification of posts related to IVF experiences as directly shared by patients on Instagram. Variables All included Instagram posts were assessed to determine author type. Variables pertaining to the author included whether the user was female or male and their IVF treatment stage including before, during, and after pregnancy. For each post, the text, hashtags, images, emojis, and relevant comments were extracted. All posts were individually transcribed into our study-specific database. Images of each post were captured and compared with the database transcription to ensure accuracy. Analysis Thematic coding was used to analyze identified posts. This was performed through pattern recognition of content and identification of emerging themes from the posts [25]. A four-member team began by coding the first day in February, and common themes and subthemes were agreed upon by all team members who created a preliminary codebook for further analysis. Emojis were not coded in isolation; rather, they were analyzed in conjunction with text due to the potential for ambiguity and misinterpretation [26]. After a low degree of discordance was observed, the remaining posts were coded by two-member teams. Each team member completed individual coding followed by open coding in two-member teams to reach a consensus on the multiple themes assigned to each post. The preliminary codebook remained unchanged as no themes or subthemes were identified throughout the coding of the remaining 4 days. The final codebook consisted of five major themes and sixteen minor subthemes. After data extraction, the frequencies for each theme were calculated, and the content of each theme was assessed. Text quotes with images and emojis removed were selected by four team members who collectively decided which posts best represented each theme and respective subthemes.

A total of 916 posts were collected from five randomly selected days. Of these, 464 were eliminated based on exclusion criteria (Fig. 1). All of the 452 included posts were written by females at varying stages of IVF treatment including before, during, and after pregnancy (Table 1). Five major themes were identified including (1) sharing the medical and physical experience, (2) the emotional spectrum, (3) sources of social support, (4) coping mechanisms, and (5) education on social media. Table 2 depicts the frequency of major themes and subthemes discussed on Instagram related to IVF treatments. Table 1. | Pregnancy status | Frequency of posts (n) | |---|---| | Before pregnancy | 71.9% (325) | | During pregnancy | 14.4% (65) | | After pregnancy | 5.5% (25) | | Unable to be determined | 8.2% (37) | Table 2. | Theme | Subtheme | Frequency of posts (n) | |---|---|---| | Medical and physical experience | 76.1% (344) | | | Point in cycle | 70.6% (319) | | | Setbacks to care | 17.7% (80) | | | Changes to the body | 10.6% (48) | | | Emotions | 43.1% (195) | | | Positive | 13.1% (59) | | | Negative | 18.4% (83) | | | Conflicting | 11.5% (52) | | | Social support | 49.2% (177) | | | Positive family | 11.5% (52) | | | Positive religion | 3.5% (16) | | | Positive community receiving | 16.8% (76) | | | Positive community offering | 14.2% (64) | | | Negative community | 4.6% (21) | | | Coping | 29.9% (135) | | | Religion | 9.1% (41) | | | Self-care | 7.3% (33) | | | Positivity | 18.6% (84) | | | Education | 11.1% (50) | | | Requesting | 5.5% (25) | | | Offering | 6.0% (27) | Theme 1: medical and physical experiences The majority of the posts included descriptive medical and physical experiences of the IVF journey. Three subthemes were identified including point in cycle (70.6% of posts), setbacks to care (17.7% of posts), and changes to the body (10.6% of posts). Point in cycle was defined as any text or photo describing the point in time that a patient was in her pregnancy or treatment process such as hormonal injections, egg retrievals, embryo transfers, and ultrasound scans. Posts often consisted of women tracking their IVF experiences and sharing milestones. Women shared excitement about achieving a term pregnancy or having a critical number of eggs reach maturation. Well that escalated quickly! 1 follicle (over 10mm) last Wednesday, 6 on Saturday, 23 today! So tonight I’ll do the ‘trigger shot’ for an egg retrieval on Wednesday! I feel like a week ago we were deciding whether or not we were even ready for this. In contrast, several posts described unforeseen circumstances that resulted in setbacks or barriers to care such as additional procedures. Women shared emotional stories about failed cycles, miscarriages, and surgeries that were deemed necessary to combat structural abnormalities including ovarian cysts, polyps, endometriosis, and fibroids. I went to my doctor early in the month for a baseline appointment only to find that I had a cyst on my ovary that was producing estrogen. Also, not my first time with this. Every time something gets pushed back on this journey it is a gut punch because everything is so time related. Posts within the barriers and setbacks to care subtheme often mentioned the financial strain of not only IVF but also the naturopathic ways to improve fertility such as supplements and acupuncture. Then we sat down with the financial advisor, and that’s when the tears started. Even with discounts, everything combined will be $25k. Maybe more. It didn't come as a shock, but it still made my stomach knot. The last subtheme included posts sharing the physical and psychological changes to the body described as side effects of hormone injections, medications, and procedures. Women expressed changes to the body at different time points including pre-pregnancy, pregnancy, and post-partum. The weight I’ve gained, the hormones I’m still harboring, the physical fatigue & aches I struggle through daily...I don’t recognize this current version of myself. Theme 2: the emotional spectrum The emotional spectrum pertaining to the IVF experience was divided into three subthemes: positive emotions (13.1% of posts), negative emotions (18.4% of posts), and conflicting emotions (11.5% of posts). Positive emotional expression was largely exhibited by posts describing feelings of happiness, excitement, and gratefulness. This is it! yahoo! We just pulled the trigger. Ready for the big day on the 5th Feb. Eggcited much!...

of negative emotions centered around feelings of sadness, worry, uncertainty, and disappointment. Sources of sadness included the infertility diagnosis, low egg retrieval numbers, failed transfer outcomes, and miscarriages. Women often worried about future situations such as never achieving pregnancy. …I’d love to say I feel positive and confident going into egg collection but I don’t. I just feel very very sad. Once again my body has failed us and sometimes the words just aren’t there to express how that feels. Posts that expressed multiple emotions were subclassified under the third subtheme of conflicting emotions defined as contradictory sentiments such as “nervous but excited” or “anxious but scared.” As we enter February, we are hoping this will be our month. FET [frozen embryo transfer] due toward the end of February we are both excited but also extremely nervous to know the outcome. Theme 3: sources of social support Multiple sources of support were identified including family (11.5% of posts), religion (3.5% of posts), and the community (14.2-16.8% of posts). Support from family consisted of immediate family members, children, and partners who were present through difficult times, assisted with shots, and attended clinic appointments. I am thankful for all the support received. Specially, from my sweet and loving husband, who has stood by my side through every procedure, who has held my hand in countless doctor’s offices and labs. IVF patients also found support through religion, exhibited by users asking for prayers and receiving prayers from others. Prayers focused on promoting successful treatment outcomes and finding strength through the challenges. ...Guys we need your prayers. I need your prayers. Because I am so frustrated with it all. I’m frustrated with the process. I’m frustrated with my body. I’m frustrated that we’ve added yet another expense to our already empty budget. Please lift us up today. Pray that we can get this surgery scheduled quickly so I can start healing and we can move forward with no more problems. Community was the largest source of support and encouragement and was further subcategorized into support received from (16.8% of posts) and offered to the community (14.2% of posts). When describing the reception of support, many posts described the source as the online community. I started this account to document our journey and to give myself a space where I can vent and share my emotions. Reading amazing IVF warrior stories have given me so much hope and has opened a whole new world for me which I was unaware of. It has made me realise that I am not alone in this. I didn’t realise that the comfort and support from complete strangers can be so warming, something our closest family and friends can’t give. Alternatively, community support was offered by women undergoing IVF treatment and those who had previously completed IVF treatment, such as those currently or previously pregnant. They expressed support through inspirational quotes, uplifting stories, and extensions of thoughts and prayers to those in need. ...the most challenging periods in my life have always lead to the biggest blessings. the biggest upsets have always brought the biggest gifts. the things i least expect to make me happy offer me the most peace.. so here’s my wish for you: stay the course. keep going. keep believing that what you deeply desire is meant for you. because it is. it really really is..it’s always darkest before the dawn. and when that dawn comes, girl, it’s gonna be one epic sunrise…. The overwhelming majority of posts detailing social support were positive; however, negative experiences within the community were discussed (4.6% of posts) including a lack of understanding about the IVF experiences and struggles with infertility. Negative statements pertained to receiving unsettling advice about getting pregnant (i.e., being informed not to stress so much or to consider adoption). Theme 4: coping mechanisms Women within the IVF community often authored posts related to coping mechanisms applied throughout the IVF process. Patients described coping mechanisms related to the use of religion (9.1% of posts), self-care (7.3% of posts), and positivity (18.6% of posts). Posts with the theme of coping via religious mechanisms used the phrasing of placing their trust in God as well as praying to God for success. ...I remind myself that my word for 2020 is ‘hope’ and as I am reminded each night in my devotional, my hope isn’t in supplements, a clean diet or organic products, but my hope is in God. I pray each day that he protects our embryo that is waiting for us, allows my body and our doctors to create more normal embryos, and grants us the desires of our hearts. We are so ready for you, baby. We are doing everything we can to prepare ourselves for you and dream of the day that you are in our arms… Instagram users also posted about how they coped with a failed cycle or the stressors of the IVF process through self-care. Self-care activities included shopping, meditating, reading, performing physical activity, and going to the spa. Just take a minute Today I woke up feeling anxious, I had a knot in my stomach and a head full of negative thoughts. I’m 5 days into this cycle and the doubts and fears were starting to creep in. So I decided to put on my trainers and head out for a walk. I put my happiest playlist on and headed for the forest behind our house. 40 minutes later I arrived back home feeling peaceful, the knot had disappeared and, as cliche as it sounds, I felt like a new woman... The majority of posts within the coping theme used positivity to help get through the various stressors that many patients endure throughout the IVF process. ...While hope can be the most crushing thing of all, I don’t think it’s silly to hold on to. Despite getting knocked down I will keep hoping... I’ll keep seeking my rainbow in the storm. Theme 5: education Education was divided into the subthemes of requesting (5.5% of posts) and offering (6.0% of posts). Posts demonstrated that the advice provided was more diverse and specific than the advice requested. Women used this platform to educate others by describing their specific protocols, elucidating the costs of IVF, recommending questions to ask during medical appointments, and promoting the use of additive therapies such as supplements, diets, and acupuncture. Estrogen is used during transfer prep and post transfer to help grow your uterine lining. My clinic likes to see the lining at a 7-8mm range but this time around we are shooting for a higher number (personal protocol). Estrogen is also needed in your body to support the pregnancy… In comparison, the nature of information requested included general advice for new IVF community members, personal experiences regarding the use of medications such as side effects, and guidance regarding how to prepare for procedures. We got a whole lot of information today that was really overwhelming and I am still trying to digest it all. If you did IVF or are in the process right now, what do you wish you knew at the beginning? What advice would you give someone just starting out?

Given the potentially challenging experiences of the IVF patient population, including expenses, time, and emotional implications, further exploration of patient experiences is warranted. This study used public posts on Instagram and identified five key themes regarding their IVF experience. Posts most commonly detailed the medical and physical experience of IVF and specifically focused on detailing the patient’s point in cycle (70.6% of posts). This may suggest the role of Instagram as a way to journal online and share experiences with others. By posting, women may find comfort in sharing their story and connecting with others in similar stages of treatment. This finding is contrasted by a prior study by Sormunen et al. who suggested that IVF patients were less likely to discuss infertility and results of tests with people outside of the family [27]. Sormunen et al. additionally suggested that this reluctancy to share experiences with others puts IVF patients at higher risk of IVF-related stress and mental health conditions [27]. Our analysis shows that social media may provide a necessary, and alternative, outlet for IVF patients to discuss experiences outside of the family bridging any barriers that prevented this open dialogue. Post analysis further demonstrated that patients shared varying emotions throughout IVF treatment. Negative emotions were most commonly discussed highlighting the challenges associated with this rigorous biomedical process (18.4% of posts). As such, there could be a role for medical providers to provide support and teach emotional regulation techniques throughout fertility treatment as these strategies have been shown to be protective against mental health conditions [24, 28]. Instagram posts from our population also detailed sources of social support with the largest percentage being from other IVF community members (16.8% of posts). This suggests that women who turn to Instagram to document their IVF experiences predominantly find support in one another, which indicates that social media platforms can be used to build support networks. Additionally, this may represent an opportunity for infertility specialists to engage with the IVF community and provide comfort or encouragement to patients. The majority of posts discussed positive support; however, further studies are needed to assess the impact of negative support and the effect on women engaging in these social media platforms before future recommendations are made. Women undergoing IVF treatments also shared posts that illustrated their coping mechanisms. This information is insightful as prior studies have suggested that the specific type of coping strategy utilized by IVF patients can positively or negatively correlate with depression, anxiety, or emotional distress [29]. In our study, the most common coping mechanism documented was positivity, a form of emotion-focused coping (18.6% of posts). This type of coping mechanism has proven to be successful in mitigating anxiety in the IVF community, specifically while women wait for outcomes of fertility treatment cycles [30]. Further, posts discussing negative emotions were often coupled with positive coping strategies which may represent the dissonance between thoughts and emotions of IVF patients during the rigorous treatment protocols. For example, several posts expressed sadness or a sense of defeat following an IVF setback, such as a failed embryo transfer. Within the same post, the desire to stay positive and continue the IVF process was also expressed in order to ultimately achieve the goal of pregnancy. This coupling represents a beneficial strategy previously described as being protective against mental health conditions, a known risk for IVF patients [29]. Given the uniqueness of the patient population, future studies should consider analyzing the effectiveness of the aforementioned coping strategy within the IVF community. To follow, infertility specialists should consider partnering with mental health care providers who can provide teachings on these demonstrated coping skills in order to best prepare all patients for IVF treatment challenges. While posts pertaining to education, whether requesting or offering, were among the minority, their existence supports current literature which suggests that individuals with chronic medical conditions utilize social media and other online sources to supplement information received from healthcare professionals [14, 16]. Given that the accuracy of medical information shared on social media is not guaranteed, it is important for providers to mitigate the risks of misinformation and consider directly providing evidence-based medical information to the webspace community. This highlights an important opportunity for obstetrician-gynecologists to join the social media community and ensure accuracy of circulating health information. In addition, future studies should aim to assess the accuracy of the information shared by patients online as well as how providers currently interact with the IVF community. In our study, all of the included posts were published by females which may be explained by the nature of more IVF procedures directly impacting females as well as the higher percentage of females who utilize Instagram compared with males [20]. Many females discussed that their motive for posting was to normalize the experience of IVF. Partners of IVF patients may engage in posts of a different content and were not adequately investigated in this study. The lack of male participation may be due to preference to not share medical information as noted in one observed post or other reasons which need to be further evaluated in additional studies. Reddit should be considered in future studies as a platform for evaluating the male IVF experience as this online platform has been shown to be more frequently visited by users who identify as male [23]. Our study utilized social media posts to more candidly capture the daily experiences and thoughts of IVF patients. This study is the first to systematically analyze the qualitative experiences of IVF patients shared on Instagram and illustrates that utilizing hashtags is a reproducible method that can be expanded in future studies. This methodology, however, has several limitations. The use of a single hashtag limited the potential posts used for thematic analysis. As a result, the themes identified may not be comprehensive of the entire infertility community on social media, and therefore, future studies should assess and compare other possible hashtags. Another limitation of our study was the robust exclusion criteria. Out of 916 posts collected from five randomly selected days, 464 were excluded. Although the exclusion criteria were present in order to better understand IVF patient’s social media use, it is probable that by excluding non-English posts, videos, and those reposted from another user, we may be missing further insight into how communities and coping strategies are utilized. It should also be noted that the infertility population is diverse. IVF patients that document their experience on a public platform may not be representative of the entire community, such as those individuals who do not utilize social media, and therefore, represent a potentially skewed and biased population. Another limitation is that community demographics such as age, race, and ethnicity were unable to be collected and, therefore, it is unknown if our sample represents certain IVF sub-populations that utilize social media more often. While outside the scope of this study, future studies should consider delineating additional details such as the age of and total posts for each account. Furthermore, determining the chronological relationship between account creation and IVF cycles as well as the frequency of social media posts during active treatment should be evaluated to better describe the community’s pattern of Instagram usage. Moreover, Instagram was chosen as the only social media platform to analyze based on the availability of public posts and the frequency of reproductive-aged females using the platform compared with Facebook, Twitter, and Reddit [20, 22, 23]. Future studies should consider analysis of additional social media platforms to better detail the experiences, emotions, and needs of the IVF community. Our study systematically investigated how social media is utilized by women undergoing IVF treatments. The findings suggest that Instagram is utilized by IVF patients as an online support platform to share experiences, express emotions, offer and receive support, and provide and receive treatment education. Practitioners should consider educating patients on evidence-based coping strategies and emotional regulation techniques to help decrease the risk of mental health conditions. It is imperative that providers acknowledge the supportive nature of online communities and recognize their potential in providing supplemental care for their IVF patients. Author’s contributions All the authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by H.R.P., A.M.H., H.M.S., and H.M.L. The manuscript was drafted, revised critically for important intellectual content, and approved by all authors for publication. Data availability The data that support the findings of this study are available publicly on the Instagram platform. The data that support the findings of this study are available on request from the corresponding author (A.J.W.). Compliance with ethical standards Conflict of interest The authors declare that they have no conflict of interest. Ethical approval Not applicable. Consent to participate Consent was not required as this study involved publicly available posts. Code availability Not applicable Footnotes Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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