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Contents: Original Research

Instagram Users' Experiences of Miscarriage

Mercier, Rebecca J. MD, MPH; Senter, Katherine BA; Webster, Rachel MD; Henderson Riley, Amy DrPh

Author Information
doi: 10.1097/AOG.0000000000003621
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Approximately 9–20% of all pregnancies result in miscarriage or fetal loss.1 Clinical information about the diagnosis and treatment of miscarriage is widely available.2 However, psychosocial implications are less widely discussed. Prior clinical studies have found that women and their partners experience grief over the loss of a pregnancy.3,4 After miscarriage, women may experience depression and anxiety5,6 and posttraumatic stress disorder.7 In several studies, women report having inadequate support and information from health care providers8–10 and feelings of social isolation.11 One qualitative study of two online forums about recurrent pregnancy loss found that women turn to online communities for both information and social support regarding the topic of pregnancy loss.12 Those authors suggest that other mainstream social media platforms may be an untapped source of data about patient experience of miscarriage.

In 2014, Jessica Zucker,13 PhD, a clinical psychologist specializing in women's reproductive and maternal mental health, started the #ihadamiscarriage campaign to encourage individuals to share their experiences of miscarriage on Instagram. The hashtag and its purpose were publicized in stories published on several online media sites between 2015 and 2018. Instagram is a free, photo-based social media application that is accessed by approximately 1 billion users each month. Instagram posts can include photos, videos, text captions, and hashtags—the symbol “#” followed by text. Users can search hashtags to view related posts in aggregate, and the platform is generally used as a venue for both expression and social connection, as users follow the posts of other users or search hashtags for postings relevant to their interests.

Qualitative analysis of Instagram posts is an established research method that has been used to explore the social experience of funeral practices14 and health behavior.15 We hypothesized that the text and photos shared by users under #ihadamiscarriage could provide a novel and unfiltered picture of patient experiences of miscarriage. We performed this qualitative study to explore the shared characteristics of miscarriage as expressed by Instagram users and to consider how this information might inform clinical care and support provided to women undergoing or who have experienced pregnancy loss.

METHODS

We performed this cross-sectional study by creating a database of 200 social media posts on Instagram that included #ihadamiscarriage. The Thomas Jefferson University institutional review board approved the study (19E.063). Because posts included in the study were publicly available online, we did not obtain informed consent from users; however, we did de-identify posts to protect the privacy of these users.

We started data collection by searching posts with the #ihadamiscarriage hashtag and selecting the most recent publicly available posts that met our inclusion and exclusion criteria. Data collection occurred on five dates between March and May 2019. The dates of data collection were selected arbitrarily; however, we specifically avoided October 15, because it is Pregnancy Loss and Miscarriage Awareness Day, and holidays related to birth, including Easter and Mother's Day. We included posts that used the #ihadamiscarriage hashtag and described an experience of miscarriage.

We excluded any post that did not use the #ihadamiscarriage hashtag, was an advertisement of a product or service, was a promotion of another Instagram page or account, was posted by Jessica Zucker, PhD (creator of the campaign), herself, was clearly a “repost” of another Instagram post, or was not in English. We excluded posts containing video, because the analysis of video content was expected to be significantly different than the analysis process for text and photos alone. Additionally, we excluded posts based on content, excluding posts in which the text was strictly about infertility but unrelated to miscarriage or loss, was about neonatal death (not included in our definition of miscarriage), was substantially unrelated to miscarriage (eg, posts about weight loss or body change), was about elective abortion without reference to ending a wanted pregnancy, or was about the birth of a new child but without reference to a prior miscarriage.

After we selected each appropriate post, we extracted the text with associated hashtags, images, and emoji into a Microsoft Word document. If the Instagram user had continued their post into the comment section, we included any additional text, hashtags, and emoji in the extraction, because we considered this to be a portion of the original post. We did not include further posts or comments, because these were generally by other users and did not reflect the experience of the original user. We saved all emoji as screenshots to preserve their initial image. We de-identified the posts by removing the username and assigned each post a study number.

We recorded the usernames and associated study numbers in a separate document for later reference to the original post. For the posts that did not meet the inclusion or exclusion criteria, we recorded the date of the post, along with a tally of which exclusion criteria disqualified the post. We performed a test extraction in which two team members reviewed 103 posts, and 33 posts met criteria for inclusion in the study. We collected these posts to refine the extraction process and ensure that the inclusion and exclusion criteria were appropriate to collect a sample of posts that depicted users' personal experiences with miscarriage. These posts from the test extraction were not included in the final data set.

On the first official date of data collection, we extracted 54 posts and analyzed them with qualitative methods guided by directed content analysis. As a four-member multidisciplinary team, we performed open coding, where all posts were read by all team members and each member identified common themes that emerged from the text and images; these were identified as codes. After discussion, we achieved consensus on the most common codes and their definitions. We then created a preliminary codebook to organize these codes. We uploaded the posts and codebook to NVivo 12 and conducted additional coding in which specific text and photo elements in each post were tagged with the relevant codes within NVivo 12. Over the four additional data-collection dates, we extracted 146 more posts, resulting in a total of 200 posts that were coded by the team. We revised the codebook through group discussion and consensus as additional themes emerged. After reviewing a total of 759 posts and extracting 200 posts that met the inclusion criteria, we considered the sample to be saturated and well-represented by the final version of the codebook.

Each individual team member coded at least 25% of the posts using the final version of the codebook (A.H.R. posts 1–60; R.J.M. posts 50–110; K.S. posts 100–153 and 170–200; R.W. posts 150–200), and 25% of the database was double-coded by two team members to ensure consistent application of the codes (A.H.R. and R.J.M. posts 50–60; R.J.M. and K.S. posts 100–110; K.S. and R.W. posts 170–200) The posts that had been coded by two team members were reviewed by both members, and any discrepancies were resolved by consensus. We calculated the final intercoder reliability and percentage agreement to assess coding accuracy. During the data-cleaning process, we noted that a few post extractions were missing some of the hashtags included at the end of the post. We reviewed all 200 posts to ensure accuracy of the extraction process and added any missing hashtags. After coding was complete, we grouped the codes into overarching themes, creating a conceptual model that depicted how the Instagram users within this representative sample expressed their physical and emotional journeys through miscarriage.

RESULTS

Our final sample consisted of 200 posts extracted on five randomly selected days (Fig. 1). The mean kappa coefficient for posts that were double-coded by two team members was 0.95, indicating excellent interrater reliability (range −0.15 to 1.00). We did note a lack of any agreement on certain codes in a small number of posts; however, this lack of agreement was noted in only 4 out of a total of 1,815 coding instances. Percentage of agreement analysis supported this result, with a mean of 99% (range 64–100%) agreement of all codes.

Fig. 1.
Fig. 1.:
Flow diagram of data extraction of 200 Instagram posts.Mercier. Instagram Users' Experience of Miscarriage. Obstet Gynecol 2019.

Salient codes developed through an iterative process fell under five overarching themes: 1) medical and physical experiences of miscarriage, 2) social experiences of miscarriage, 3) the emotional spectrum of experiencing a miscarriage, 4) family identity and the effects of miscarriage, and 5) mechanisms of processing and coping through a miscarriage. The following sections summarize the findings under each theme and include illustrative quotes and example posts.

Many of the posts included rich descriptions of the medical and physical experiences of miscarriage. Such posts often included text and photos describing visits to a health care facility, surgeries (ie, dilation and curettage) including photos of hospital beds and stretchers, and ultrasound scans and blood tests (ie, human chorionic gonadotropin tests) to determine viability. Similarly, many posts described experiences surrounding learning about the lack of fetal cardiac activity (always referred to in posts as a “heartbeat”) and the meaning of the lack of a heartbeat for a woman and her partner.

“The dreaded words, ‘Sorry, there is no heartbeat’ will have forever changed our lives!” [text with post #2]

Both textual and visual description of the physical spaces where miscarriages occurred were common. One post vividly described the experience of miscarrying while on an airplane, and another included a photo of a bathroom with the text:

“No matter what, I have to go back in here after my miscarriage. A lot happened in here.” [text with post #27]

Many posts described a burden of waiting and uncertainty, such as waiting to see whether human chorionic gonadotropin levels were doubling, whether fetal cardiac activity could be detected on ultrasound scan, or whether medical or surgical intervention would be required.

“Now, I know that tomorrow will either lead to a definitive answer—miscarriage #2—or additional testing and waiting. I'm really hoping beyond hope that tomorrow leads to more waiting.” [text with post #55]

Often posts detailed prescribed meanings to miscarriage- and pregnancy-related milestones, such as significant dates of a loss and due dates. These dates were expressed as anniversaries and marked by women for some time after the pregnancy loss.

“One year ago this week was our first due date— the one we never got to.” [text with post #17]

“9 years ago and I still wonder who you would be” [text with post #181]

By far the most common code under the theme of social experiences of miscarriage was how sharing or disclosing one's miscarriage on Instagram was an attempt to both seek support and community and to offer solidarity to others. Posts frequently offered words of support and encouragement through text and with images, such as inspirational quotes attributed to others.

“Tell the story of the mountain you climbed. Your words could become a page in someone else's survival guide”

“I offer my story with the hope that someone somewhere will hear it and be comforted. You are not alone.” [text with post #33]

At the same time, a smaller subset of posts expressed fear or conflicted feelings about sharing one's miscarriage on social media.

“i've gone back+forth on whether i'd share the happenings of the last several days with the internet. i have conflicting thoughts with social media as of late. but i just can't pretend as if my life fits perfectly into squares+pretty photos of florals. it doesn't. [text with post #90]

Some social experiences described reactions and social support (or lack thereof) after a miscarriage from family members, friends, and colleagues. Several of these posts described interactions and comments that women found insensitive and hurtful.

“I often feel like miscarriage is misunderstood. People will tell you it's common. People will tell you to try again. People will tell you it happens, but time will heal it. ‘It'll all go away when you hold a baby in your arms,’ they say.” [text with post #102]

Finally, under this theme, women described and posted images of jealousy and resentment after their miscarriage. In particular, women described how they found pregnancy announcements shared on various social media platforms (not limited to Instagram) to be upsetting and challenging. Jealousy was also expressed in terms of seeing other pregnant women and interacting with pregnant women at social engagements such as baby showers and family and work events.

“Every time I see a pregnant woman, I'm reminded of what should have been.” [text with post #104]

Posts described five discrete emotions expressed after experiencing a miscarriage: grief, conflicted emotions, anger, regret, and hope. Grief was the most common emotion expressed on Instagram, with a majority of posts recounting feelings of sadness, heartbreak, and the grieving process.

“My heart will always be broken for our daughter. Always.” [text with post #144]

“Sometimes there are no words to describe the feeling of losing our baby.” [text with post #43]

Many posts were not simply about one emotion, such as grief, but instead described or pictured several emotions simultaneously.

“you can feel happy for her and you can feel sad for you at the same time”

“feeling hopeful, brave, strong & broken all at once.” [text with post #175]

“Confused and traumatised but smiling?” [text with post #177]

In such posts, individuals seemed to use the platform to express their emotions and also to sort through conflicted feelings.

The emotions anger and regret were closely related but seemed to have distinct roots. Text and photos expressing anger frequently described emotions including self-blame, blame of one's body, anger at God, and feeling like one had done everything right.

I think it's normal to be pissed at your body—especially when it feels like it failed you and even more so when it feels like it keeps failing you.” [text with post #130]

Regret, however, was frequently described in terms of guilt. Posts referenced questioning whether actions could have caused or prevented the miscarriage, feeling guilty for failing to remain pregnant, and feeling conflicted and guilty about moving forward after a miscarriage.

“the what if's, the what did i do, the what could i have done better…so much guilt.” [text with post #116]

“There are some days that I completely forget that we lost a baby and I feel overwhelming guilt about that.” [text with post #120]

The final emotion identified in the sample of Instagram posts was hope, including hope for the future and hope for a future pregnancy. Oftentimes posts expressing hope also referenced support and encouragement (under the social experiences theme), as hope was portrayed not just for oneself but to support others also experiencing miscarriage. Words like “we,” “us,” and “our” were observed in these posts as an indicator of collective experiences.

“Some days it's hard to comprehend, but I have hope that the Lord has a plan for us. I know we will experience the joy of holding a sweet baby one day. We will get to walk through the ups and downs of parenthood. [text with post #147]

Miscarriage was regularly depicted as a pivotal and life-defining moment for women; posts characterized experiences that reflected one's new identity as a mother, even without any living children. Posts referred to being a mother, a father, or a parent after miscarriage and specifically referenced being parents of miscarried children. Although some posts focused on one's personal identity or change in identity, many more expressed the positive involvement of their partners. Such posts referred to the role and involvement of the partner during the miscarriage, as well as coping and support after the event. This was expressed in both text and pictures, which included photos of couples, pictures of two people holding hands, and similar images of families taken together in unity.

The largest effect of miscarriage on one's identity appeared to occur among women who experienced recurrent pregnancy loss. Instagram users colloquially applied two or more losses to posts under the term recurrent pregnancy loss (often shortened under the hashtag #RPL). A large number of posts included references to recurrent loss, potentially indicating that some Instagram users who find the #ihadamiscarriage hashtag or turn to Instagram for support are a unique subgroup with specific clinical implications and needs related to recurrent grief and loss.

We're among the 1 in 4 who've had a miscarriage and the 1 in 100 who have had three or more. And I know that regardless of medical definitions, technicalities, and specifics of our story, I need to share—to put face to the struggle, give a voice to those who aren't ready to share, and hopefully help end the stigma and shame surrounding infertility and miscarriage.” [text with post #125]

Women with recurrent loss and those who had experienced a single loss both expressed that a prior miscarriage created worry and stress about a current or future pregnancy. Posts described anxiety that another miscarriage could happen, such as fear of bleeding and cramping. One post, for example, described how the individual was on knicker (or underwear) watch to check for bleeding.

“Knicker watch. Not sexy, like at all. But real. Navigating pregnancy after a loss is a bit of a new experience for me. I'm 8 weeks in and so far there's been a whole myriad of emotions and fears. One notable thing is, I am constantly on knicker watch. This was definitely not a part of my previous pregnancies…Because when you've seen red, the depth of that fear and panic stays with you, and still it lingers somewhere in the background.” [text with post #73]

The term “rainbow baby” was used to describe a baby born after a miscarriage (ie, the rainbow after the storm), and posts frequently contained images of rainbows, the rainbow emoji, and rainbow hashtags to either delineate a current healthy pregnancy or future hope for a rainbow.

The final theme that emerged from our analysis was reflected in posts that illustrated mechanisms of processing and coping through a miscarriage. Religion was a common mechanism of processing and coping. Posts under the religion code explicitly mentioned God, faith, or prayer or listed a bible verse. Separately, but closely related, posts referred to meeting the baby again, such as meeting the baby in heaven and having the baby watch over living children.

“Today I'm choosing to believe that my baby girl is an angel in heaven and she will be looking down and watching over our future baby to come.” [text with post #72]

Remembrance of the miscarriage was seen as a common element of coping. Miscarriages were memorialized by users in a variety of ways, including planting a tree, getting a tattoo, creating a memorial or artwork, and naming the baby. Oftentimes, when the sex of the baby was known, posts included references to the sex or a gender-specific name. Once again, poetry and inspirational quotes also served to remember the miscarriage. Poetry and quotes were included both in the text of posts and in photos, although the origin and authenticity of the quotes was often unknown or not cited.

An experience of or appreciation of nature also functioned as a coping mechanism. These posts included photos of plants, nature, animals, pets, weather, and references to seasons.

“As a naturalistic person, I've been spending time in nature trying to come to peace with losing our first child. We never got to meet our little one and it's been difficult to come to terms with what has been intangible. For some peace, we purchased this beautiful plant that will be a part of our future nursery once we feel ready to try again.” [text with post #28]

Several posts spoke of care-seeking behavior related to mental health, such as seeking help for anxiety and depression and attending therapy, counseling, and other professional services. Still others spoke of what was deemed self-care, including healthy personal coping strategies such as exercise, nutrition, and wellness and posting images of exercise equipment and work-out gear.

“So, two weeks after finding out our news, I decided the following Monday (today) I was starting a new workout program…For my health and the future of our family I know I can't allow myself to stay in a place of sulking and feeling sorry for myself. So I did it…I showed up for myself because I'm worth it and I refuse to stay down.” [text with post #50]

Many of the posts describing coping also expressed a sense of resilience and strength that grew from the miscarriage experience. For many, this strength was expressed as a readiness to attempt pregnancy again after loss.

“I'm ready. I'm ready to move forward in our lives. I'm ready to reclaim my body. I'm ready to reclaim my strength.” [text with post #130].

DISCUSSION

Our study found that large numbers of women post on Instagram about their miscarriage experiences. The miscarriage experience that women demonstrate on social media is broadly similar to what has been described in prior literature that has queried women about miscarriage in a research setting. This concordance between women's spontaneous expressions and research confirms that miscarriage is an experience marked by a sense of grief and loss that is often underappreciated by health care providers and may persist for months or years after the initial event. Health care providers are an integral component of the miscarriage experience. However, a Cochrane review has noted that there is little high-quality research into what interventions may most benefit women emotionally after pregnancy loss,16 and many health care providers are unable to provide informed and dedicated emotional support to patients with pregnancy loss.

Miscarriage is increasingly recognized as a special case of grieving and loss. Women who experience pregnancy loss are at increased risk of depression, anxiety, and posttraumatic stress disorder months and even years after the event.5,7 The experience of a miscarriage is one of medical uncertainty, both in waiting for a diagnosis and the frequent lack of a definitive explanation of what “went wrong”17; this unique sensation of unexplained and unanticipated loss heightens grief for women and their partners.9 Couples may experience a miscarriage with an emotional response similar to any other death,18 but they face health care providers and others who do not consider a miscarriage to be a loss worth grieving.6,19 Persistent social conventions encourage nondisclosure of early pregnancy, and therefore silence about early pregnancy loss. This creates a sense of isolation for many women experiencing miscarriage.11 Unlike other types of loss or death, there are no established rituals analogous to memorials or funerals that are used to mark miscarriages, which may further increase isolation and complicated grief.3

Our findings suggest that expression on social media may fill this gap for many women, providing a space to disclose miscarriage events and to memorialize the lost pregnancy.

Women share online about their miscarriages for a variety of reasons, but a major driver is to seek support and community. Use of social media is not without some risks to users; in posting online a person may risk emotional or social vulnerability and may be exposed to negative comments from other users. However, because social media has become a more central part of society, most users are able to navigate to their own comfort levels and cope with negativity much as they would in “real life.” Although many women discuss a fear of publicly sharing about their miscarriage experience, this is balanced against an equally prevalent positive spin on the decision to share. In addition to seeking support for themselves, women express a desire to help and provide support to others through their own experiences. This is similar to what has been documented as occurring in other, older forms of online communication such as online forums and chat rooms.12,20

Instagram in particular may provide a uniquely useful format for addressing miscarriage-related grief. The use of hashtags, which allows posts to be searched thematically, can integrate specific themes into the “feed” that a person also uses for other social media activities. In this way, users are able to both speak to and hear from their own personal contacts, but also to integrate into a larger community. Examinations of the use of the #funeral hashtag suggest that hashtagged posting around such events helps users to feel that they have shared in a ritual and gathering aspect of an important emotional event.14 Perhaps the #ihadamiscarriage hashtag and related tags may represent an online grief ritual that fills a gap in current social practices regarding miscarriage. The combination of photo sharing and text may be particularly powerful for this use as well. Image-based platforms may be better at alleviating loneliness and isolation by most effectively simulating a social presence among users.21 We saw many users post images of photos, artwork, or objects described as memorializing their miscarriage combined with text addressing the miscarriage process in some way; the Instagram format may be a site where women can find community, share, and memorialize their lost pregnancies in a way that is uniquely beneficial. Instagram has been studied as a tool for health promotion, community-building, and education in conditions such as diabetes.15 Health care providers may consider discussing use of this platform as a support and coping mechanism in the setting of pregnancy loss, especially for those patients who are already engaged on the platform.

Our study has several strengths. By qualitatively examining social media posts rather than directly interviewing or surveying people, this method provides insight into the daily lived experience and actions of women undergoing pregnancy loss without the filter of a research environment. Use of an established, publicized, and popular hashtag to identify posts for inclusion allowed us to mimic typical use of the platform, ensuring a sample of relevant posts and also giving insight into what would be seen and read by users who engaged with the hashtag themselves.

The study does have several limitations. By focusing on one hashtag and specific timeframes to gather posts, this is a relatively small sample of a vast, live, and continually changing online network. Although we selected #ihadamiscarriage as a tag that specifically would select users posting about a personal miscarriage experience (rather than simply discussing the topic of miscarriage), several other miscarriage hashtags do exist. It is possible that, by focusing on one hashtag, we missed other significant usage patterns. Additionally, although in the absence of personal photos the race and ethnicity of users cannot be confirmed, we did note that the community of posters seemed rather homogenous with little racial diversity. One post was found that commented on this specifically, noting the lack of “black and brown” voices in the online miscarriage community. Therefore, we cannot conclude that our findings are applicable to all demographic or social groups.

Overall, we conclude that many women do post online about their miscarriages to find support and community and specifically use the platform to help break the silence around miscarriage. Health care providers should consider this as a part of the patient experience when caring for patients with pregnancy loss and possibly encourage engagement on social media on the topic for those patients who use this platform, alongside traditional recommendations such as counseling or support groups. Future studies could potentially engage directly with Instagram users to discuss the particulars of the use of the platform; different hashtags and modalities should be employed to verify these results across other subsets of posts and communities. Active studies with patients who have experienced pregnancy loss could examine outcomes among women who do and do not engage on social media to evaluate whether this tool is associated with patient well-being after miscarriage.

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