How to deal with risks around online support after pregnancy loss

Analysis: Social media can provide opportunities to share personal stories of pregnancy loss, but using such platforms needs to be carefully managed

(Some readers may find this report upsetting)

“You feel comfort in the fact there are other people out there who know exactly how you feel. It’s a lonely place after loss, but being able to share in people’s experiences makes it feel a bit better.”

Those affected by pregnancy and baby loss often experience feelings of intense grief, as they must come to terms with the sudden and unexpected end of their pregnancy. Research has also linked pregnancy and baby loss to a higher risk of developing symptoms of depression, anxiety, and post-traumatic stress disorder (PTSD), further highlighting the negative psychological impact that these losses may have.

A supportive network of family and friends is important for managing grief and other difficult emotions after pregnancy loss. However, as pregnancy loss is often shrouded in silence and stigma, many struggle to speak openly about their experiences of loss with those around them.

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In these cases, research has shown that social media platforms can provide valuable opportunities to share personal stories of pregnancy loss, and to connect with other users who relate to these stories. Online pregnancy loss communities (often formed on Facebook Groups and online forums) are specifically designed for those affected by pregnancy loss to come together, talk about their experiences and support one another through their grief.

However, online environments also pose important risks to platform users, which can jeopardise their online safety. In light of these risks, a recent study has found that users taken certain measures to protect themselves when seeking support online after pregnancy loss, including the following.

Avoiding misinformation

As healthcare experiences and medical issues are often discussed in online support communities, this means that false and unreliable health advice can easily be circulated in online spaces where group discussions are not closely monitored. To avoid falling victim to misinformation shared in online pregnancy loss communities, users have spoken about the importance of fact-checking health information found in these spaces. They have done this by consulting reliable, evidence-based sources (e.g. HSE or NHS websites).

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To further protect themselves, users have also carefully judged the quality of moderation in different online communities. In online pregnancy loss communities, moderators work to foster supportive discussions and protect their members from inappropriate content. When users felt that certain moderators addressed misinformation well, and created a safe and comfortable space for members to share their pregnancy loss stories, they were more inclined to engage with these specific communities in the future.

“Muting” upsetting content

Certain types of social media content, such as birth and pregnancy-related posts, can be upsetting to read after going through pregnancy loss. As a result, users have described using “mute” features on social media to hide certain profiles from their feed. These features were also useful when they needed a break from the emotional stories that were regularly shared in online pregnancy loss communities.

Similarly, users have described changing their ad settings to avoid upsetting birth and pregnancy-related ads that are often pushed through social media algorithms. In recent years, Google have introduced a feature for users to limit ads about pregnancy and parenting, while Facebook and Instagram also offer features to reduce personalised ads. However, users have noted that their attempts to limit pregnancy-related ads on Facebook have often been unsuccessful.

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Talking about loss through private channels

Although speaking about pregnancy loss online can lead to supportive reactions, many users have been fearful of receiving judgemental or dismissive replies from others. To manage this risk, certain users decided to only speak about their losses in anonymous online pregnancy loss communities, where they felt less likely to be judged. However, some users described receiving few likes and replies on their posts in these online communities, which led them to feel ignored or rejected.

Certain users found ways to instead speak about pregnancy loss on their personal social media profiles, as they took advantage of platform features that kept this activity hidden. Instagram Q&As allow users to take part in public discussions anonymously, while users can also share posts and stories with a chosen selection of their followers using the “Close Friends” feature.

Acting as an “observer” in online spaces

Rather than discussing their loss experiences online, other users mainly used online platforms to read about pregnancy loss through various sources such as communities; blogs; social media profiles). This aligns with past research, where many users have explained that simply reading about pregnancy loss experiences helped them to process their grief and come to terms with their loss. However, a recent study has also identified a risk of online pregnancy loss community members becoming overly fixated on reading emotional stories of loss, which could delay their grieving process.

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This study shows that while social media may be a useful resource after pregnancy loss, there is a risk these platforms can instead increase distress if they are not appropriately engaged with. Additionally, even when users carry out these protective practices, factors such as social media algorithms and online community dynamics mean that online spaces can still present risks of distress and social rejection.

Therefore, while platform users should work to prioritise their safety when seeking support online after pregnancy loss, there is a need for social media platforms, online pregnancy loss communities, and researchers to further protect users by exploring and addressing these outstanding issues.

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The study of online platform engagement after pregnancy loss is part of the Sharing When Caring project funded by Lero, the Research Ireland Centre for Software

The views expressed here are those of the author and do not represent or reflect the views of RTÉ. If you have been affected by issues raised in this article, support information is available online

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